Jekyll2019-11-01T20:28:37+00:00https://opening-pathways.github.io/website/feed.xmlOpening PathwaysOpening pathways for discovery, research, and innovation in health (and healthcare).{"github"=>"opening-pathways"}Reflecting on the life of the Opening Pathways grant2019-11-01T00:00:00+00:002019-11-01T00:00:00+00:00https://opening-pathways.github.io/website/reflecting-on-life-of-opening-pathways-grant<p>In a two year grant project with hundreds of conversations, it’s hard to reflect articulately and summarize the most impactful moments and key things we’ve learned in a single post. Thankfully, we’ve been <a href="http://openingpathways.org/blog/">documenting in this blog</a> along the way, which helped us track progress and helps us now in seeing the meandering paths that this grant has taken. I say meandering, because one of the things I included in my final grant report to RWJF was advice to other grantees to ‘build in extra time for other important work that will arise throughout the life of the grant, and have flexibility in your proposed work to be able to address emergent work’. <a href="http://openingpathways.org/annual-report">Like our other reports to RWJF</a>, you can read the full text of our final report at the bottom of the post, but I wanted to use this post to also reflect more broadly about the life of this grant, project, and team.</p>
<p>One of the frameworks we’ve used in reflecting on this project has been an analogy. Paul has described that when he’s been discussing the Opening Pathways work inside RWJF, he’s asked: What happens when a new ‘lifeform’ is introduced into an existing - and closed - ecosystem? What changes? Who changes? What are the ripple effects?</p>
<h3 id="logistically-speaking">Logistically speaking</h3>
<p>Positioning me as a patient PI as the new ‘lifeform’ in the ecosystem of traditional healthcare research was challenging from the start. For example, what ‘shape’ does the lifeform take? For me, that question was largely a practical one: How do I get the money to do the work? Do I create an organization to receive the grant? How much headache would that be? Can I even do that? Or, is there another way using another institution to receive the money, and then I can subcontract to get the money, while the institution handles the paperwork? We tried the latter method for this grant, with ASU kindly serving as the institution that ‘received’ the grant, because originally both of my co-PI’s (Erik Johnston and Eric Hekler) and the rest of the team members were at ASU.</p>
<p>How did that work? It did allow us to get the grant and start the project: RWJF gave ASU the money, but <a href="http://openingpathways.org/first-lessons-learned-as-patient-PI">as I’ve mentioned</a>, there’s been a lot of paperwork headaches throughout the entire lifecycle of the grant with me and other subcontractors getting paid, getting the financial reports submitted back to RWJF, etc. It’s been challenging to feel and hold responsibility for the grant as PI, but not have any actual power to push ASU along any more quickly. Thankfully, Erik Johnston has been championining internally at ASU and trying to make it work to the best of his ability, but <strong>one of his reflections has been noting the difference between ‘allowing’ such a project to happen and fully supporting and encouraging such a project, with such a structure, to happen</strong>. This has been an issue all the way to the end of the Opening Pathways grant.</p>
<blockquote>
<p>As a result, one idea that has emerged is that of using a more traditional fiscal sponsor organization for future patient-driven projects. Instead of having to create your own organization, you would run a grant through a fiscal sponsor organization. They’re already designed to be a pass-through institution, so theoretically there would be less bureaucracy and more support for the PI using this method. I have another emerging project in this space, in which we are experimenting with using a fiscal sponsor as the grantee institution, and while we have not received a decision on funding yet, the application process has been smoother and easier. This may be partially related to my increased level of experience in applying for grants, but either way so far it’s been a good experience, and I do think it’s worth exploring as another alternative model. I plan to continue exploring it myself and sharing my experiences.</p>
</blockquote>
<p>Thankfully, the structure of this grant and the funding mechanism was probably the hardest and most time consuming part of the grant.</p>
<p>Unfortunately, despite my attempts to give feedback to ASU about the process of being a community PI on a grant through their organization, I don’t think it’s gone anywhere, so I don’t feel like we’ve affected change at ASU as a direct result of my work there. However, I do think the best impact for ASU has been having a co-PI, Erik Johnston, at ASU who was and has been impacted by this work. He has written future grants with some of these learnings in mind with regards to building equitable relationships in the communities they propose to partner with in the future. I hope this ripple effect at the individual level of PI’s adjusting their grant work impacts the ecosystem player that is ASU and similar organizations in the long run, but that’s a longer tail effect than I was hoping to see as a result of our work.</p>
<h3 id="how-did-the-ecosystem-react">How did the ecosystem react?</h3>
<p><strong><em>Overall, my conclusion is that I don’t think the ecosystem really noticed overall or cares that there’s a new ‘lifeform’ in action</em></strong>.</p>
<p>Like with OpenAPS, n=1 is not that meaningful (to anyone other than the ‘one’); people ask, “So, what?” and “Does it work for others?”. Thankfully, like OpenAPS, n=1 is becoming noticeably (n=1)*many with regards to patients leading research. Many patients are now becoming PI’s or Co-PI’s with grants from RWJF, PCORI, and other funding institutions. I can confidently say that funding patients as PI’s does work, is meaningful, and creates incredible results. But for the ecosystem to really adapt, we need many more of us ‘lifeforms’ to start altering the ecosystem. <strong>I don’t think our single lifeform (grant) is enough to really answer the question of what happens when we are added to a closed ecosystem</strong>. That’s one of the reasons we created the <a href="https://patient.openingpathways.org/">patient pathways site</a> to help connect and encourage patients; and that’s also why we created the <a href="https://partner.openingpathways.org">partner toolkit</a> to help support and bring more partners for patients into this new way of working.</p>
<p>Those sites were heavily influenced throughout this project’s evolution, and potential impact on the ecosystem, by my growing realization that the most important work we were doing was not the final ‘product’ of the grant, as I had originally thought, but the way in which we were working, and the many, many ‘hard’ meta-conversations we were having about power dynamics in the traditional ecosystem. Paul and I both reflected on the power dynamics specifically between the funder (RWJF/Paul) and the grantee (me/Opening Pathways team) in two blog posts, where we each asked questions and answered them, then had a chance to respond to each other’s posts further. <a href="http://openingpathways.org/reflections-funder-grantee-relationship">Here is my post</a>; and <a href="http://openingpathways.org/reflections-funder-grantee-relationship-funder-perspective">here is Paul’s</a>, if you missed them previously. In terms of ripple effects, Paul’s post was posted internally at RWJF and I did not see any direct follow up discussion that may have happened there. But I am hoping that some of the discussions Paul started internally at RWJF as a result of our conversations, and these posts in particular, have their own ripple effect and yield more discussions at RWJF as they (hopefully) consider funding other non-traditional and patient PI’s to lead subsequent work in similar fields that align with their vision.</p>
<h3 id="how-ive-personally-evolved">How I’ve personally evolved</h3>
<p>One specific reflection on my individual role as a lifeform in this ecosystem is that how other people perceive me is noticeably different than before. I am perceived and treated differently as a “RWJF-funded researcher.” It is apparently being used as a proxy for legitimacy and in place of more traditional credentials (e.g. a role at a traditional university). I have mixed feelings about this, because I think credentials and their proxies should be used far less often, vs. direct evaluation of actual work or contributions. But it has been a noticeable effect, more so than the effect overall of our project on the ecosystem. After discussing this periodically throughout the grant, Paul commented that the ecosystem likes clearly defined roles and individuals - and does not do well adapting or dealing with fluid identities or roles. This may also be a generational thing, as it is more generally in society today, where the current established and in-power generation is less accepting of fluidity but younger/newer generations are more accepting and able to deal with the resulting impacts of such fluidity. As a new lifeform, the current ecosystem was more accepting and open to me once I had a clearly defined role as a “grant-funded researcher”.</p>
<p>Overall, I do feel like I have evolved and learned a lot in my first-time PI role, and my comfort level with “being a researcher” has definitely grown. I’m incredibly thankful for the team’s support as I evolved in this role and in this project: everyone supported my growth and learning without fail, and adapted to support me as I evolved, which took time and effort that I greatly appreciate. This was probably less noticeable to the ecosystem, but important for my future work.</p>
<h3 id="how-our-team-evolved">How our team evolved</h3>
<p>I also noticed other members of the team growing in ways they probably did not expect. At the beginning of the project, I badgered everyone on every phone call about writing blog posts to actually capture the amazing team conversations that we were having. That transitioned into many <a href="http://openingpathways.org/writing-can-be-fun">team conversations about writing</a>, and I was thrilled to see each team member writing more and more throughout the life of the project, and also improving their writing skills and writing more frequently in other projects and channels as a result.</p>
<p>Throughout our journey, this amazing <a href="http://openingpathways.org/meet-the-team/">team</a> was key to the successful completion of this grant-funded project. I have been trying over time to figure out what those elements are that made it so easy to work with the team, and asked John to write this post a few months ago to try to capture some of the elements. He articulated that there was some <a href="http://openingpathways.org/pre-existing-culture">pre-existing team culture</a> that played a role, which I previously had not been aware of, and which I do think definitely helped. But I also think the humility with which Eric, Erik, and John (and Paul as well) approached all of our interactions and conversations also allowed for a meaningful exploration of the power dynamics between patients and traditional ecosystem lifeforms. This became apparent <a href="http://openingpathways.org/partner-narratives">when I asked them to share their narratives of this work</a>. As you can see there, and from Eric’s previous post <a href="http://openingpathways.org/bearing-witness">reflecting on how we asked him to participate at the Convening</a>, they have all been phenomenally humble, open, and receptive to thinking differently in this work.</p>
<p>As PI, I have also <a href="http://openingpathways.org/what-I-want-to-share-with-others-doing-patient-driven-work">tried to do the same</a>, including being clear about where I feel my limitations and concerns are, and asking them to be explicit throughout the lifecycle of this grant about what happens typically on their other grant-funded projects, and why, so that we could make conscious and thoughtful decisions about how this grant might be different, and why. These conversations were incredibly helpful not only for developing our team relationship and the project’s work, but also in fueling future collaboration and future work in this space. This has continued until the very end of our grant: at our last wrap-up call for this project, I specifically asked for each of us to make a list of “offers” of support for the future, as well as any “asks”, and to be explicit as possible. This fueled a valuable conversation about not closing off the relationships we have developed and want to continue in the future just because this grant is coming to an end. I’m very cognizant of the fact that in the traditional academic world, these relationships and collaborations continue naturally after grants end. But in my role outside of the academic world, it’s not something I felt I could take for granted. I was glad we had an explicit discussion around each person their offering future support in specific ways, and that everyone agreed and volunteered to stay connected in the future. <strong>So while the grant is now officially over, I can confidently say that we’re not done with this work - this is just the beginning for the next chapter of this evolving ecosystem and opening more pathways for research, discovery, and innovation in health and healthcare.</strong></p>
<hr />
<p><em>(And here’s the full report of our final RWJF report that was submitted)</em></p>
<h4 id="1-what-was-the-goal-of-your-project-do-you-have-measures-of-your-performance">1. What was the goal of your project? Do you have measures of your performance?</h4>
<p>The project met its goals:</p>
<ul>
<li>We enabled submissions and requests to work with our data science team, and commenced work on several projects, which resulted in one major scientific submission, acceptance, and presentation of a poster at an international scientific/medical conference (see <em>Lewis DM, Leibrand S, Street TJ & Phatak SS. Detecting Insulin Sensitivity Changes for Individuals with Type 1 Diabetes. 2018;67(suppl 1). Available at: https://doi.org/10.2337%2Fdb18-79-LB</em>).
<ul>
<li>However, we originally theorized success as answering one dozen research questions. We did not receive that many submissions; and many did not follow up after expressing original interest. We did, however, successfully engage those who continued to work with us. </li>
<li>As a result, we have also developed new hypotheses for the most efficient way to fund an initiative to encourage data science around patient research questions, by providing mini-grants to community members with the data science and/or technical experience to partner with the patients with data science questions, along with a specified timeline, to test in the future.</li>
</ul>
</li>
<li>We hosted a convening for traditional and non-traditional researchers, innovators, and advocates, carefully designing the meeting to ensure equitable participation.
<ul>
<li>This meeting is continually talked about by participants as the most impactful meeting they attended for the year. </li>
<li>The conversation from the meeting resulted in the design of the patient toolkit.</li>
<li>The conversations from the meeting also resulted in the idea for the humility audit/readiness quiz, for which we extended the grant for 6 months in order to complete.
<ul>
<li>The quiz is already successfully being used by individuals to assess potential partners for their work.</li>
<li>The quiz is also being proposed to be used by an entire organization in its work to balance power dynamics between the organization and community partners. </li>
</ul>
</li>
</ul>
</li>
<li>We developed the toolkits as full open source websites (two, instead of the one originally proposed) for patients <a href="https://patient.openingpathways.org/">https://patient.openingpathways.org/</a> and partners (<a href="https://partner.openingpathways.org/">https://partner.openingpathways.org/</a>). </li>
<li>We created 32 blog posts (http://OpeningPathways.org/blog) from various members of the team reflecting on the work and the meta-themes of this work.</li>
</ul>
<h4 id="2-do-you-have-any-stories-that-capture-the-impact-of-this-project">2. Do you have any stories that capture the impact of this project?</h4>
<p>Another patient has been funded as a PI on a grant project as a result of this project.</p>
<p>Additionally, the humility audit was originally used within our team. It was so powerful that we developed it into an external tool (http://partner.OpeningPathways.org/quiz), and plan to share it externally and encourage other people and organizations to use it. However, before the tool was even finalized and publicized, another organization (ASU) has included it within a proposal for another grant around community-driven work as a mechanism for balancing power dynamics with community partners for future projects. </p>
<p>In addition, the concept of community-driven design is increasingly becoming a foundational part of how the UC San Diego Design Lab is advancing the use of design for helping people. Within this, there is a strong grounding, based in part on the lived experience Dr. Hekler had in this project, on seeking to counteract confident ignorance and emotional blindness towards true meaningful equitable participation, contribution, and benefit from design. </p>
<h4 id="3-did-rwjf-assist-or-hinder-your-project-in-any-way">3. Did RWJF assist or hinder your project in any way?</h4>
<p>RWJF assisted significantly via our project officer, Paul Tarini. His practice of scheduling monthly calls with the PI and Co-PIs allowed for rich, meta-conversations about power dynamics and other impacts of our work, and allowed us to explore new aspects of this work that we would not otherwise have been likely to see.</p>
<p>This practice has been so helpful that a co-PI (Johnston) has specifically put this request into future grant proposals to build space and time for developing these types of relationships and conversations into other grants that he works on in the future. It’s also a practice the other PI’s (Lewis, Hekler) plan to continue as well.</p>
<h4 id="4-if-the-project-encountered-internal-or-external-challenges-how-did-they-affect-the-project-and-how-did-you-address-them-was-there-something-rwjf-could-have-done-to-assist-you">4. If the project encountered internal or external challenges, how did they affect the project and how did you address them? Was there something RWJF could have done to assist you?</h4>
<p>Most of the challenges have arisen from entrenched power dynamics in healthcare and research. RWJF has been a good ally (and in particular, our project officer Paul Tarini has done a great job) in helping us address the power dynamics as they influence this work and understand the ripple effects outside of this work.</p>
<p>However, we do not think these challenges have been eliminated from others doing this work, and Is something RWJF and all project officers should keep in mind moving forward when funding this type of work with non-traditional or patient PIs.</p>
<p>The other challenges existed as a result of the way the grant was set up at an institution with a patient PI who does not sit inside that organization. RWJF did what it could to encourage individuals at the institution to try to smooth processes; however, it is something that RWJF and other project officers should also be aware of and try to address proactively in future projects funded with non-traditional, new, or patient PIs who sit outside the main institution hosting the grant.</p>
<h4 id="5-has-your-organization-received-funding-from-other-foundations-corporations-or-government-bodies-for-the-project-rwjf-has-been-supporting">5. Has your organization received funding from other foundations, corporations or government bodies for the project RWJF has been supporting?</h4>
<p>No.</p>
<h4 id="6-when-considering-the-design-and-implementation-of-this-project-what-lessons-did-you-learn-that-might-help-other-grantees-implement-similar-work-in-this-field">6. When considering the design and implementation of this project, what lessons did you learn that might help other grantees implement similar work in this field?</h4>
<ul>
<li>Balancing power dynamics in the team is important, and should be addressed from the start and throughout the life of grants. </li>
<li>Build in extra time for other important work that will arise throughout the life of the grant, and have flexibility in your proposed work to be able to address emergent work.</li>
</ul>
<p>Paul and (PI Lewis) exchanged other thoughts and feedback regarding the funder-grantee relationship in written form from each of our perspectives in parallel blog posts. Please see http://openingpathways.org/reflections-funder-grantee-relationship and http://openingpathways.org/reflections-funder-grantee-relationship-funder-perspective .</p>
<p>PI Lewis has also shared advice on our project site (<a href="http://openingpathways.org/what-I-want-to-share-with-others-doing-patient-driven-work">see this post</a>) for others doing patient-driven work from non-traditional perspectives, and via <a href="http://openingpathways.org/first-lessons-learned-as-patient-PI">this post</a> about some first-time PI learnings.</p>
<h4 id="7-what-impact-do-you-think-the-project-has-had-to-date">7. What impact do you think the project has had to date?</h4>
<p>Provide evidence for all statements (e.g., publication in major journals, citations of the project in literature, major press coverage, adoption of the model by other organizations).</p>
<p>The ‘humility audit’/’readiness quiz’ is being proposed to be adopted by ASU for use in a William T. Grant application, to be used to balance the power dynamic between ASU and community members and organization for joint research and projects moving forward.</p>
<p>The team also developed <a href="https://bmcmedicine.biomedcentral.com/articles/10.1186/s12916-019-1366-x">a commentary on advancing a small data paradigm</a> based in part of this project; particularly the “flipped paradigm” of helping individuals first as a strategy for advancing science.</p>
<p>The patient (<a href="https://patient.openingpathways.org/">https://patient.openingpathways.org/</a>) site is already being used by patients to find inspiration and others like them doing similar work, and the partner toolkit (<a href="https://partner.openingpathways.org/">https://partner.openingpathways.org/</a>) is also being used by patient-partner duo’s to strengthen partner relationships and vet potential partnerships.</p>
<h4 id="8--9-not-included-because-they-have-personal-contact-information-for-follow-up">(8 & 9 not included because they have personal contact information for follow up)</h4>
<h4 id="10-what-are-post-grant-plans-for-the-project-if-it-does-not-conclude-with-the-grant">10. What are post-grant plans for the project, if it does not conclude with the grant?</h4>
<p>We plan to continue to share & promote use of the readiness quiz for partners; for more partners to share their narratives; and for more patients to share their pathways. The sites are all open source, so we hope to see more people take and build upon the content and tools developed.</p>
<h4 id="11-with-a-perspective-on-the-entire-project-what-were-its-most-effective-communications-and-advocacy-approaches-its-key-publications-and-its-nationalregional-communications-activities">11. With a perspective on the entire project, what were its most effective communications and advocacy approaches, its key publications, and its national/regional communications activities?</h4>
<p>Most effective communications have been keynote presentations by the PI that reference this work. For example, PI Lewis gave a presentation in June at the mHealth Training Institute in June 2019, discussing the Opening Pathways work, and was invited to give a similar presentation at ASCO (the major scientific cancer meeting) for cancer researchers & providers in 2020.</p>
<p>Similarly, PI Lewis’s Twitter activity announcing the grant, during the grant, and launching the final products has been highly effective. See <a href="https://twitter.com/danamlewis/status/908752572046917632?s=20">this Twitter thread regarding the project announcement that received 19,000 impressions</a>,
<a href="https://twitter.com/danamlewis/status/1187421352812138496?s=20">this thread launching the patient & partner sites</a>,
<a href="https://twitter.com/danamlewis/status/1187455397197537280?s=20">this thread highlighting the initial patient stories shared</a>, and <a href="https://twitter.com/danamlewis/status/1187472801403297792?s=20">this thread highlighting the partner narratives</a> as examples.</p>
<p>Key publications include the Opening Pathways blog itself for distributing our work widely among community partners who share in similar work, and doing so throughout the entire life of the grant and not only at key announcement points.</p>Dana LewisDana@OpeningPathways.orgIn a two year grant project with hundreds of conversations, it’s hard to reflect articulately and summarize the most impactful moments and key things we’ve learned in a single post. Thankfully, we’ve been documenting in this blog along the way, which helped us track progress and helps us now in seeing the meandering paths that this grant has taken. I say meandering, because one of the things I included in my final grant report to RWJF was advice to other grantees to ‘build in extra time for other important work that will arise throughout the life of the grant, and have flexibility in your proposed work to be able to address emergent work’. Like our other reports to RWJF, you can read the full text of our final report at the bottom of the post, but I wanted to use this post to also reflect more broadly about the life of this grant, project, and team. One of the frameworks we’ve used in reflecting on this project has been an analogy. Paul has described that when he’s been discussing the Opening Pathways work inside RWJF, he’s asked: What happens when a new ‘lifeform’ is introduced into an existing - and closed - ecosystem? What changes? Who changes? What are the ripple effects? Logistically speaking Positioning me as a patient PI as the new ‘lifeform’ in the ecosystem of traditional healthcare research was challenging from the start. For example, what ‘shape’ does the lifeform take? For me, that question was largely a practical one: How do I get the money to do the work? Do I create an organization to receive the grant? How much headache would that be? Can I even do that? Or, is there another way using another institution to receive the money, and then I can subcontract to get the money, while the institution handles the paperwork? We tried the latter method for this grant, with ASU kindly serving as the institution that ‘received’ the grant, because originally both of my co-PI’s (Erik Johnston and Eric Hekler) and the rest of the team members were at ASU. How did that work? It did allow us to get the grant and start the project: RWJF gave ASU the money, but as I’ve mentioned, there’s been a lot of paperwork headaches throughout the entire lifecycle of the grant with me and other subcontractors getting paid, getting the financial reports submitted back to RWJF, etc. It’s been challenging to feel and hold responsibility for the grant as PI, but not have any actual power to push ASU along any more quickly. Thankfully, Erik Johnston has been championining internally at ASU and trying to make it work to the best of his ability, but one of his reflections has been noting the difference between ‘allowing’ such a project to happen and fully supporting and encouraging such a project, with such a structure, to happen. This has been an issue all the way to the end of the Opening Pathways grant. As a result, one idea that has emerged is that of using a more traditional fiscal sponsor organization for future patient-driven projects. Instead of having to create your own organization, you would run a grant through a fiscal sponsor organization. They’re already designed to be a pass-through institution, so theoretically there would be less bureaucracy and more support for the PI using this method. I have another emerging project in this space, in which we are experimenting with using a fiscal sponsor as the grantee institution, and while we have not received a decision on funding yet, the application process has been smoother and easier. This may be partially related to my increased level of experience in applying for grants, but either way so far it’s been a good experience, and I do think it’s worth exploring as another alternative model. I plan to continue exploring it myself and sharing my experiences. Thankfully, the structure of this grant and the funding mechanism was probably the hardest and most time consuming part of the grant. Unfortunately, despite my attempts to give feedback to ASU about the process of being a community PI on a grant through their organization, I don’t think it’s gone anywhere, so I don’t feel like we’ve affected change at ASU as a direct result of my work there. However, I do think the best impact for ASU has been having a co-PI, Erik Johnston, at ASU who was and has been impacted by this work. He has written future grants with some of these learnings in mind with regards to building equitable relationships in the communities they propose to partner with in the future. I hope this ripple effect at the individual level of PI’s adjusting their grant work impacts the ecosystem player that is ASU and similar organizations in the long run, but that’s a longer tail effect than I was hoping to see as a result of our work. How did the ecosystem react? Overall, my conclusion is that I don’t think the ecosystem really noticed overall or cares that there’s a new ‘lifeform’ in action. Like with OpenAPS, n=1 is not that meaningful (to anyone other than the ‘one’); people ask, “So, what?” and “Does it work for others?”. Thankfully, like OpenAPS, n=1 is becoming noticeably (n=1)*many with regards to patients leading research. Many patients are now becoming PI’s or Co-PI’s with grants from RWJF, PCORI, and other funding institutions. I can confidently say that funding patients as PI’s does work, is meaningful, and creates incredible results. But for the ecosystem to really adapt, we need many more of us ‘lifeforms’ to start altering the ecosystem. I don’t think our single lifeform (grant) is enough to really answer the question of what happens when we are added to a closed ecosystem. That’s one of the reasons we created the patient pathways site to help connect and encourage patients; and that’s also why we created the partner toolkit to help support and bring more partners for patients into this new way of working. Those sites were heavily influenced throughout this project’s evolution, and potential impact on the ecosystem, by my growing realization that the most important work we were doing was not the final ‘product’ of the grant, as I had originally thought, but the way in which we were working, and the many, many ‘hard’ meta-conversations we were having about power dynamics in the traditional ecosystem. Paul and I both reflected on the power dynamics specifically between the funder (RWJF/Paul) and the grantee (me/Opening Pathways team) in two blog posts, where we each asked questions and answered them, then had a chance to respond to each other’s posts further. Here is my post; and here is Paul’s, if you missed them previously. In terms of ripple effects, Paul’s post was posted internally at RWJF and I did not see any direct follow up discussion that may have happened there. But I am hoping that some of the discussions Paul started internally at RWJF as a result of our conversations, and these posts in particular, have their own ripple effect and yield more discussions at RWJF as they (hopefully) consider funding other non-traditional and patient PI’s to lead subsequent work in similar fields that align with their vision. How I’ve personally evolved One specific reflection on my individual role as a lifeform in this ecosystem is that how other people perceive me is noticeably different than before. I am perceived and treated differently as a “RWJF-funded researcher.” It is apparently being used as a proxy for legitimacy and in place of more traditional credentials (e.g. a role at a traditional university). I have mixed feelings about this, because I think credentials and their proxies should be used far less often, vs. direct evaluation of actual work or contributions. But it has been a noticeable effect, more so than the effect overall of our project on the ecosystem. After discussing this periodically throughout the grant, Paul commented that the ecosystem likes clearly defined roles and individuals - and does not do well adapting or dealing with fluid identities or roles. This may also be a generational thing, as it is more generally in society today, where the current established and in-power generation is less accepting of fluidity but younger/newer generations are more accepting and able to deal with the resulting impacts of such fluidity. As a new lifeform, the current ecosystem was more accepting and open to me once I had a clearly defined role as a “grant-funded researcher”. Overall, I do feel like I have evolved and learned a lot in my first-time PI role, and my comfort level with “being a researcher” has definitely grown. I’m incredibly thankful for the team’s support as I evolved in this role and in this project: everyone supported my growth and learning without fail, and adapted to support me as I evolved, which took time and effort that I greatly appreciate. This was probably less noticeable to the ecosystem, but important for my future work. How our team evolved I also noticed other members of the team growing in ways they probably did not expect. At the beginning of the project, I badgered everyone on every phone call about writing blog posts to actually capture the amazing team conversations that we were having. That transitioned into many team conversations about writing, and I was thrilled to see each team member writing more and more throughout the life of the project, and also improving their writing skills and writing more frequently in other projects and channels as a result. Throughout our journey, this amazing team was key to the successful completion of this grant-funded project. I have been trying over time to figure out what those elements are that made it so easy to work with the team, and asked John to write this post a few months ago to try to capture some of the elements. He articulated that there was some pre-existing team culture that played a role, which I previously had not been aware of, and which I do think definitely helped. But I also think the humility with which Eric, Erik, and John (and Paul as well) approached all of our interactions and conversations also allowed for a meaningful exploration of the power dynamics between patients and traditional ecosystem lifeforms. This became apparent when I asked them to share their narratives of this work. As you can see there, and from Eric’s previous post reflecting on how we asked him to participate at the Convening, they have all been phenomenally humble, open, and receptive to thinking differently in this work. As PI, I have also tried to do the same, including being clear about where I feel my limitations and concerns are, and asking them to be explicit throughout the lifecycle of this grant about what happens typically on their other grant-funded projects, and why, so that we could make conscious and thoughtful decisions about how this grant might be different, and why. These conversations were incredibly helpful not only for developing our team relationship and the project’s work, but also in fueling future collaboration and future work in this space. This has continued until the very end of our grant: at our last wrap-up call for this project, I specifically asked for each of us to make a list of “offers” of support for the future, as well as any “asks”, and to be explicit as possible. This fueled a valuable conversation about not closing off the relationships we have developed and want to continue in the future just because this grant is coming to an end. I’m very cognizant of the fact that in the traditional academic world, these relationships and collaborations continue naturally after grants end. But in my role outside of the academic world, it’s not something I felt I could take for granted. I was glad we had an explicit discussion around each person their offering future support in specific ways, and that everyone agreed and volunteered to stay connected in the future. So while the grant is now officially over, I can confidently say that we’re not done with this work - this is just the beginning for the next chapter of this evolving ecosystem and opening more pathways for research, discovery, and innovation in health and healthcare. (And here’s the full report of our final RWJF report that was submitted) 1. What was the goal of your project? Do you have measures of your performance? The project met its goals: We enabled submissions and requests to work with our data science team, and commenced work on several projects, which resulted in one major scientific submission, acceptance, and presentation of a poster at an international scientific/medical conference (see Lewis DM, Leibrand S, Street TJ & Phatak SS. Detecting Insulin Sensitivity Changes for Individuals with Type 1 Diabetes. 2018;67(suppl 1). Available at: https://doi.org/10.2337%2Fdb18-79-LB). However, we originally theorized success as answering one dozen research questions. We did not receive that many submissions; and many did not follow up after expressing original interest. We did, however, successfully engage those who continued to work with us. As a result, we have also developed new hypotheses for the most efficient way to fund an initiative to encourage data science around patient research questions, by providing mini-grants to community members with the data science and/or technical experience to partner with the patients with data science questions, along with a specified timeline, to test in the future. We hosted a convening for traditional and non-traditional researchers, innovators, and advocates, carefully designing the meeting to ensure equitable participation. This meeting is continually talked about by participants as the most impactful meeting they attended for the year. The conversation from the meeting resulted in the design of the patient toolkit. The conversations from the meeting also resulted in the idea for the humility audit/readiness quiz, for which we extended the grant for 6 months in order to complete. The quiz is already successfully being used by individuals to assess potential partners for their work. The quiz is also being proposed to be used by an entire organization in its work to balance power dynamics between the organization and community partners. We developed the toolkits as full open source websites (two, instead of the one originally proposed) for patients https://patient.openingpathways.org/ and partners (https://partner.openingpathways.org/). We created 32 blog posts (http://OpeningPathways.org/blog) from various members of the team reflecting on the work and the meta-themes of this work. 2. Do you have any stories that capture the impact of this project? Another patient has been funded as a PI on a grant project as a result of this project. Additionally, the humility audit was originally used within our team. It was so powerful that we developed it into an external tool (http://partner.OpeningPathways.org/quiz), and plan to share it externally and encourage other people and organizations to use it. However, before the tool was even finalized and publicized, another organization (ASU) has included it within a proposal for another grant around community-driven work as a mechanism for balancing power dynamics with community partners for future projects. In addition, the concept of community-driven design is increasingly becoming a foundational part of how the UC San Diego Design Lab is advancing the use of design for helping people. Within this, there is a strong grounding, based in part on the lived experience Dr. Hekler had in this project, on seeking to counteract confident ignorance and emotional blindness towards true meaningful equitable participation, contribution, and benefit from design. 3. Did RWJF assist or hinder your project in any way? RWJF assisted significantly via our project officer, Paul Tarini. His practice of scheduling monthly calls with the PI and Co-PIs allowed for rich, meta-conversations about power dynamics and other impacts of our work, and allowed us to explore new aspects of this work that we would not otherwise have been likely to see. This practice has been so helpful that a co-PI (Johnston) has specifically put this request into future grant proposals to build space and time for developing these types of relationships and conversations into other grants that he works on in the future. It’s also a practice the other PI’s (Lewis, Hekler) plan to continue as well. 4. If the project encountered internal or external challenges, how did they affect the project and how did you address them? Was there something RWJF could have done to assist you? Most of the challenges have arisen from entrenched power dynamics in healthcare and research. RWJF has been a good ally (and in particular, our project officer Paul Tarini has done a great job) in helping us address the power dynamics as they influence this work and understand the ripple effects outside of this work. However, we do not think these challenges have been eliminated from others doing this work, and Is something RWJF and all project officers should keep in mind moving forward when funding this type of work with non-traditional or patient PIs. The other challenges existed as a result of the way the grant was set up at an institution with a patient PI who does not sit inside that organization. RWJF did what it could to encourage individuals at the institution to try to smooth processes; however, it is something that RWJF and other project officers should also be aware of and try to address proactively in future projects funded with non-traditional, new, or patient PIs who sit outside the main institution hosting the grant. 5. Has your organization received funding from other foundations, corporations or government bodies for the project RWJF has been supporting? No. 6. When considering the design and implementation of this project, what lessons did you learn that might help other grantees implement similar work in this field? Balancing power dynamics in the team is important, and should be addressed from the start and throughout the life of grants. Build in extra time for other important work that will arise throughout the life of the grant, and have flexibility in your proposed work to be able to address emergent work. Paul and (PI Lewis) exchanged other thoughts and feedback regarding the funder-grantee relationship in written form from each of our perspectives in parallel blog posts. Please see http://openingpathways.org/reflections-funder-grantee-relationship and http://openingpathways.org/reflections-funder-grantee-relationship-funder-perspective . PI Lewis has also shared advice on our project site (see this post) for others doing patient-driven work from non-traditional perspectives, and via this post about some first-time PI learnings. 7. What impact do you think the project has had to date? Provide evidence for all statements (e.g., publication in major journals, citations of the project in literature, major press coverage, adoption of the model by other organizations). The ‘humility audit’/’readiness quiz’ is being proposed to be adopted by ASU for use in a William T. Grant application, to be used to balance the power dynamic between ASU and community members and organization for joint research and projects moving forward. The team also developed a commentary on advancing a small data paradigm based in part of this project; particularly the “flipped paradigm” of helping individuals first as a strategy for advancing science. The patient (https://patient.openingpathways.org/) site is already being used by patients to find inspiration and others like them doing similar work, and the partner toolkit (https://partner.openingpathways.org/) is also being used by patient-partner duo’s to strengthen partner relationships and vet potential partnerships. (8 & 9 not included because they have personal contact information for follow up) 10. What are post-grant plans for the project, if it does not conclude with the grant? We plan to continue to share & promote use of the readiness quiz for partners; for more partners to share their narratives; and for more patients to share their pathways. The sites are all open source, so we hope to see more people take and build upon the content and tools developed. 11. With a perspective on the entire project, what were its most effective communications and advocacy approaches, its key publications, and its national/regional communications activities? Most effective communications have been keynote presentations by the PI that reference this work. For example, PI Lewis gave a presentation in June at the mHealth Training Institute in June 2019, discussing the Opening Pathways work, and was invited to give a similar presentation at ASCO (the major scientific cancer meeting) for cancer researchers & providers in 2020. Similarly, PI Lewis’s Twitter activity announcing the grant, during the grant, and launching the final products has been highly effective. See this Twitter thread regarding the project announcement that received 19,000 impressions, this thread launching the patient & partner sites, this thread highlighting the initial patient stories shared, and this thread highlighting the partner narratives as examples. Key publications include the Opening Pathways blog itself for distributing our work widely among community partners who share in similar work, and doing so throughout the entire life of the grant and not only at key announcement points.Announcing the patient pathways site and partner toolkit from Opening Pathways2019-10-24T00:00:00+00:002019-10-24T00:00:00+00:00https://opening-pathways.github.io/website/announcing-patient-pathways-site-and-partner-toolkit<p>As of today, if you were to click on <a href="http://OpeningPathways.org">OpeningPathways.org</a>, you’d notice a slightly different look than before. This site that you’re reading this blog post on was originally used to announce the Opening Pathways project, and then mostly to host this blog to document and share our work and our team’s evolving thought processes over the last two years. But now, when landing on OpeningPathways.org, people will not only be encouraged to read the blog content from the Opening Pathways project, but also to visit one or both of the new sites that are the output of Opening Pathways: <a href="https://patient.openingpathways.org/">the patient pathways site</a>, and <a href="https://partner.openingpathways.org/">the partner toolkit</a>.</p>
<p><img src="/assets/img/Screenshot_OpeningPathways_homepage.png" width="244" height="200" align="left" hspace="20" alt="screenshot of the new OpeningPathways homepage" /></p>
<h3 id="patient-pathways">Patient Pathways</h3>
<p>The patient pathway site <a href="https://patient.openingpathways.org/">https://patient.openingpathways.org/</a> is one that we had planned to do from the start of this project. We were hoping to help inspire and shine a light on the many pathways that patients are taking in this work. However, one thing we heard loud and clear at the Convening, and subsequently when talking with other patient innovators and researchers, was the value in hearing that ‘you are not alone,’ even when you happen to be breaking ground on a new pathway.</p>
<p>Our ideas for this site have evolved significantly over the past few years. Initially, I was thinking we would have more specific tools and resources for patients. But again, what I learned would be the most valuable thing is highlighting the similarities across people’s pathways, even when they might look different, to help patients find others like them, and share lessons among pathways.</p>
<p><img src="/assets/img/example_patient_pathways.png" width="300" height="200" align="left" hspace="20" alt="example of some of the patient pathways being shared" /></p>
<p>Therefore, the patient site is organized around groups of pathways, with individual stories shared under each pathway. For example, pathways that have stories so far include creating your own organization; working within an organization or institution; recognizing that some people take multiple pathways within and around organizations when necessary; and, others still work outside the bounds of traditional organizations.</p>
<p>I encourage you to read the stories within the pathways, and if you’re a patient, <a href="https://patient.openingpathways.org/submit">please consider sharing your story for the site</a>! Don’t worry if there’s not a pathway that you feel matches your story - we’ll add more <a href="https://patient.openingpathways.org/pathways">pathways</a> to match the stories as they come in!</p>
<p><img src="/assets/img/submit_story.png" width="400" height="220" align="left" hspace="20" alt="submit your patient story" /></p>
<p>Each story has similar elements, so you’ll be prompted to share what your pathway has been; how and why you got started; what you have done; what lessons you’ve learned that you want to share with others; and your vision or what comes next. There’s also space to include links to videos or other resources to share your work.</p>
<p>(Special thank you to Emily Kramer-Golinkoff, Corrie Painter, Erin Moore, Liz Salmi, among others, for sharing their stories early on and for providing feedback throughout the Opening Pathways work!)</p>
<h3 id="partner-toolkit">Partner toolkit</h3>
<p>As I <a href="http://openingpathways.org/grant-calendar-extension">described in this post</a> about our decision to request a no-cost grant extension, we wanted the extra time to work on an additional site/project that we identified as a core need. Namely, we wanted to create an accompanying toolkit <a href="https://partner.openingpathways.org/">https://partner.openingpathways.org/</a> for ‘partners’ who support patients in their work.</p>
<p>Why? Well, as we’ve documented over the course of the grant, partners of patients (such as my co-PIs and team!) can be incredibly supportive and helpful in accomplishing the goals that we patients set out to achieve. However, we also have <a href="http://openingpathways.org/partner-narratives">learned</a> that it takes time to establish productive partnerships and relationships, and that despite the best of intentions, sometimes the prior experiences, pre-existing biases, or normative power of the traditional roles of partners can <a href="http://openingpathways.org/bearing-witness">overtake</a> or <a href="http://openingpathways.org/honoring-agency">detrimentally</a> impact a project or collaboration. Outside of this grant, I have had my own experiences with successful partnerships, as well as some partnerships that taught me a lot about what to look for in future partner relationships.</p>
<p>Because this has been an ongoing part of our meta-conversations, a lightbulb went off for our team as we discussed how to ‘help’ partners help patients. We started discussing this toolkit with plans to include stories from partners already doing this work; an invitation for others to share their own narratives about their experiences partnering with patients and what they learned; resources for partners who are just getting started in working with patients; and also a soft on- or off- ramp for partners who may or may not yet be ready to commit their energy or resources to an equitable partnership.</p>
<p>One of the key tools we developed is something that was first idealized as a ‘humility audit,’ which Eric, Erik, and John all thoughtfully did on their own by documenting their narratives (<a href="http://openingpathways.org/partner-narratives">read them here</a>) and experiences with this work. The more we discussed it, the more we realized that an audit or ‘quiz’ would be useful to help guide partners in considering their current workload, their goals for partnership, and whether they’re ready. Thus, the ‘<a href="https://partner.openingpathways.org/quiz">readiness quiz</a>’ was born.</p>
<p><img src="/assets/img/readiness_quiz.png" width="300" height="180" align="left" hspace="20" alt="image for the readiness quiz" /></p>
<p>We know people entering the partner site may be new to the idea of exploring partnerships with patients; they may already be working with a specific patient or patient group and want support in their work; or they may be developing a new relationship with a new patient partner. This quiz supports all of those groups, and is designed so that you can save the URL to your results and/or print/save them to be used to discuss with others in the future.</p>
<p>If you are a partner that already has a specific patient partner in mind, the quiz will enable you to think through your work in context of your proposed partnership. It will help you consider not only your expertise but also what your patient partner’s priorities, strengths, skills, abilities, and needs are. How does your work and abilities align with their work and skills? Are you ready to work collaboratively as true, meaningful partners? You may have all of these answers; and if not, the quiz will guide you in considering some of these questions and helping you start a discussion with your patient partner to better align from the start of your potential collaboration.</p>
<p>However, you may not have a specific patient partner in mind - and that’s ok! The quiz can still be a useful resource for you to think about what you’ll need to successfully work with a patient in the future, and the <a href="https://partner.openingpathways.org/resources">resources section</a> may guide you in identifying your future patient partner.</p>
<p>But, if after reading working through the quiz, you don’t feel ready to commit to partnering with someone else in ways that might change you, there is nothing wrong with that! It’s wonderful that you realized this about yourself and you can always come back when you feel more ready for this type of partnership.</p>
<p>After completing the quiz, we hope you’ll share your results and start a discussion with your patient partner (new or existing). The partners who have taken the quiz so far and done their own ‘humility audit’ have shared that it has been useful for self-reflection on their current workload and priorities and goals, and useful for enabling alignment with their patient partners.</p>
<p>We also hope you’ll consider <a href="https://partner.openingpathways.org/submit">sharing your own narrative</a>, perhaps guided by the reflections from your quiz, and inspire other partners who are collaborating with patients as well. <a href="https://partner.openingpathways.org/narratives">You can see the existing library of partner narratives here</a>.</p>
<h3 id="open-source">Open Source</h3>
<p>These new sites, <a href="http://openingpathways.org/everything-is-open-source">like everything else</a> for the Opening Pathway project, are open source. So if you like the site design, the quiz material, or anything else, you’re welcome to take them, run with them, and build upon them further. We’re already hearing feedback that the quiz is being used in various formats by new grant teams to form equitable partnerships with new communities, which is fantastic. If you end up using material from any of these sites, please do share - we’d love to know how and if they’re being used. You can email Dana@OpeningPathways.org if you have questions, have feedback, or to let us know if you’re using any of the Opening Pathways materials.</p>
<h3 id="thank-you">Thank you</h3>
<p>Our Opening Pathways project has been supported by many people and many organizations. Thank you first and foremost to RWJF for funding this work. Thank you to ASU for being the primary host institution for the grant. And thanks go to the Engagement Lab @ Emerson College (in particular, Johnny Richardson) for the development of the Patient and Partner sites.</p>
<p>And, if you are reading this, thank you for your interest and support of Opening Pathways!</p>Dana LewisDana@OpeningPathways.orgAs of today, if you were to click on OpeningPathways.org, you’d notice a slightly different look than before. This site that you’re reading this blog post on was originally used to announce the Opening Pathways project, and then mostly to host this blog to document and share our work and our team’s evolving thought processes over the last two years. But now, when landing on OpeningPathways.org, people will not only be encouraged to read the blog content from the Opening Pathways project, but also to visit one or both of the new sites that are the output of Opening Pathways: the patient pathways site, and the partner toolkit. Patient Pathways The patient pathway site https://patient.openingpathways.org/ is one that we had planned to do from the start of this project. We were hoping to help inspire and shine a light on the many pathways that patients are taking in this work. However, one thing we heard loud and clear at the Convening, and subsequently when talking with other patient innovators and researchers, was the value in hearing that ‘you are not alone,’ even when you happen to be breaking ground on a new pathway. Our ideas for this site have evolved significantly over the past few years. Initially, I was thinking we would have more specific tools and resources for patients. But again, what I learned would be the most valuable thing is highlighting the similarities across people’s pathways, even when they might look different, to help patients find others like them, and share lessons among pathways. Therefore, the patient site is organized around groups of pathways, with individual stories shared under each pathway. For example, pathways that have stories so far include creating your own organization; working within an organization or institution; recognizing that some people take multiple pathways within and around organizations when necessary; and, others still work outside the bounds of traditional organizations. I encourage you to read the stories within the pathways, and if you’re a patient, please consider sharing your story for the site! Don’t worry if there’s not a pathway that you feel matches your story - we’ll add more pathways to match the stories as they come in! Each story has similar elements, so you’ll be prompted to share what your pathway has been; how and why you got started; what you have done; what lessons you’ve learned that you want to share with others; and your vision or what comes next. There’s also space to include links to videos or other resources to share your work. (Special thank you to Emily Kramer-Golinkoff, Corrie Painter, Erin Moore, Liz Salmi, among others, for sharing their stories early on and for providing feedback throughout the Opening Pathways work!) Partner toolkit As I described in this post about our decision to request a no-cost grant extension, we wanted the extra time to work on an additional site/project that we identified as a core need. Namely, we wanted to create an accompanying toolkit https://partner.openingpathways.org/ for ‘partners’ who support patients in their work. Why? Well, as we’ve documented over the course of the grant, partners of patients (such as my co-PIs and team!) can be incredibly supportive and helpful in accomplishing the goals that we patients set out to achieve. However, we also have learned that it takes time to establish productive partnerships and relationships, and that despite the best of intentions, sometimes the prior experiences, pre-existing biases, or normative power of the traditional roles of partners can overtake or detrimentally impact a project or collaboration. Outside of this grant, I have had my own experiences with successful partnerships, as well as some partnerships that taught me a lot about what to look for in future partner relationships. Because this has been an ongoing part of our meta-conversations, a lightbulb went off for our team as we discussed how to ‘help’ partners help patients. We started discussing this toolkit with plans to include stories from partners already doing this work; an invitation for others to share their own narratives about their experiences partnering with patients and what they learned; resources for partners who are just getting started in working with patients; and also a soft on- or off- ramp for partners who may or may not yet be ready to commit their energy or resources to an equitable partnership. One of the key tools we developed is something that was first idealized as a ‘humility audit,’ which Eric, Erik, and John all thoughtfully did on their own by documenting their narratives (read them here) and experiences with this work. The more we discussed it, the more we realized that an audit or ‘quiz’ would be useful to help guide partners in considering their current workload, their goals for partnership, and whether they’re ready. Thus, the ‘readiness quiz’ was born. We know people entering the partner site may be new to the idea of exploring partnerships with patients; they may already be working with a specific patient or patient group and want support in their work; or they may be developing a new relationship with a new patient partner. This quiz supports all of those groups, and is designed so that you can save the URL to your results and/or print/save them to be used to discuss with others in the future. If you are a partner that already has a specific patient partner in mind, the quiz will enable you to think through your work in context of your proposed partnership. It will help you consider not only your expertise but also what your patient partner’s priorities, strengths, skills, abilities, and needs are. How does your work and abilities align with their work and skills? Are you ready to work collaboratively as true, meaningful partners? You may have all of these answers; and if not, the quiz will guide you in considering some of these questions and helping you start a discussion with your patient partner to better align from the start of your potential collaboration. However, you may not have a specific patient partner in mind - and that’s ok! The quiz can still be a useful resource for you to think about what you’ll need to successfully work with a patient in the future, and the resources section may guide you in identifying your future patient partner. But, if after reading working through the quiz, you don’t feel ready to commit to partnering with someone else in ways that might change you, there is nothing wrong with that! It’s wonderful that you realized this about yourself and you can always come back when you feel more ready for this type of partnership. After completing the quiz, we hope you’ll share your results and start a discussion with your patient partner (new or existing). The partners who have taken the quiz so far and done their own ‘humility audit’ have shared that it has been useful for self-reflection on their current workload and priorities and goals, and useful for enabling alignment with their patient partners. We also hope you’ll consider sharing your own narrative, perhaps guided by the reflections from your quiz, and inspire other partners who are collaborating with patients as well. You can see the existing library of partner narratives here. Open Source These new sites, like everything else for the Opening Pathway project, are open source. So if you like the site design, the quiz material, or anything else, you’re welcome to take them, run with them, and build upon them further. We’re already hearing feedback that the quiz is being used in various formats by new grant teams to form equitable partnerships with new communities, which is fantastic. If you end up using material from any of these sites, please do share - we’d love to know how and if they’re being used. You can email Dana@OpeningPathways.org if you have questions, have feedback, or to let us know if you’re using any of the Opening Pathways materials. Thank you Our Opening Pathways project has been supported by many people and many organizations. Thank you first and foremost to RWJF for funding this work. Thank you to ASU for being the primary host institution for the grant. And thanks go to the Engagement Lab @ Emerson College (in particular, Johnny Richardson) for the development of the Patient and Partner sites. And, if you are reading this, thank you for your interest and support of Opening Pathways!Maybe slay the dragon second2019-07-22T00:00:00+00:002019-07-22T00:00:00+00:00https://opening-pathways.github.io/website/maybe-slay-the-dragon-second<p>When you log into World of Warcraft or any other role-playing video game, your first job or prompt is not to slay the dragon. You are given tasks appropriate to your skill level, which in the beginning may be exploring the village, collecting points by talking to the local farmers, or any other combination of short, simple missions like retrieving a token. These beginning activities are not for nothing, and in fact, help build the foundational skills and habits used later in the game for the large tasks. In essence, video games and the users who inhabit their worlds know how to build optimistic, problem-solvers by presenting appropriately scaled challenges and rewards in a stepwise fashion.</p>
<p>This “Slay the Dragon Second” principle is widely applicable, including for the Quantified Self community, which aims to generate “self-knowledge through self-tracking with technology”. We have seen members track habits and add or subtract new or old ones to improve their physical or mental performance. However, they often fall short of their goals, not from a lack of care or interest, but simply because they try to add too much too fast. We recommend to slay the dragon second. Instead of adding in a 3 mile run, ketogenic diet, and a half hour of meditation all in the same week, we advocate for adding one habit in its simplest form to build your skills repertoire. Think of it as the orientation and exploration phase of ‘level one’ in World of Warcraft. By starting at the proper level (instead of jumping straight to the final boss), you can mitigate the risk of all of the wheels coming off your experiment if just one habit goes by the wayside. Habits are not built or broken immediately, so keep in mind:</p>
<p><em>Rome wasn’t built in a day, but it also didn’t fall overnight</em></p>
<p>What if we took the Dragon Principle a step further? To build healthy engagement habits, we see this applicability especially fitting for the civic engagement space. When we ask members of the public to join a city committee, attend rallies, and visit their state capitol, they are most likely to participate once and never return, especially if it is the beginning of their civic engagement experience. Instead of an ‘all-or-nothing’ approach to participation, we prefer to see these engagement opportunities as chances to flex our civic engagement muscles and become oriented in the world of public service. By encouraging citizens to engage with their governments in small, tangible ways (a letter to your representative or attending a city council meeting as a spectator), then we can help members to build faith and understanding in a system that not only welcomes their feedback but shows these same people that they are affecting outcomes through their engagement and that our public servants are responsive to feedback. By slowly introducing new missions and new goals, we will prepare our publics for the big operations, for when we call upon them to slay the dragon.</p>
<p>There is a lot to learn from game designers. By thoughtfully presenting appropriately scaled challenges and rewards for these activities, more people will be willing to contribute and engage in a long term and beneficial way for themselves and their communities.</p>
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<p><em>This post was co-authored by Erik Johnston and <a href="https://isearch.asu.edu/profile/2168018">Jessica Givens</a></em></p>Erik JohnstonWhen you log into World of Warcraft or any other role-playing video game, your first job or prompt is not to slay the dragon. You are given tasks appropriate to your skill level, which in the beginning may be exploring the village, collecting points by talking to the local farmers, or any other combination of short, simple missions like retrieving a token. These beginning activities are not for nothing, and in fact, help build the foundational skills and habits used later in the game for the large tasks. In essence, video games and the users who inhabit their worlds know how to build optimistic, problem-solvers by presenting appropriately scaled challenges and rewards in a stepwise fashion. This “Slay the Dragon Second” principle is widely applicable, including for the Quantified Self community, which aims to generate “self-knowledge through self-tracking with technology”. We have seen members track habits and add or subtract new or old ones to improve their physical or mental performance. However, they often fall short of their goals, not from a lack of care or interest, but simply because they try to add too much too fast. We recommend to slay the dragon second. Instead of adding in a 3 mile run, ketogenic diet, and a half hour of meditation all in the same week, we advocate for adding one habit in its simplest form to build your skills repertoire. Think of it as the orientation and exploration phase of ‘level one’ in World of Warcraft. By starting at the proper level (instead of jumping straight to the final boss), you can mitigate the risk of all of the wheels coming off your experiment if just one habit goes by the wayside. Habits are not built or broken immediately, so keep in mind: Rome wasn’t built in a day, but it also didn’t fall overnight What if we took the Dragon Principle a step further? To build healthy engagement habits, we see this applicability especially fitting for the civic engagement space. When we ask members of the public to join a city committee, attend rallies, and visit their state capitol, they are most likely to participate once and never return, especially if it is the beginning of their civic engagement experience. Instead of an ‘all-or-nothing’ approach to participation, we prefer to see these engagement opportunities as chances to flex our civic engagement muscles and become oriented in the world of public service. By encouraging citizens to engage with their governments in small, tangible ways (a letter to your representative or attending a city council meeting as a spectator), then we can help members to build faith and understanding in a system that not only welcomes their feedback but shows these same people that they are affecting outcomes through their engagement and that our public servants are responsive to feedback. By slowly introducing new missions and new goals, we will prepare our publics for the big operations, for when we call upon them to slay the dragon. There is a lot to learn from game designers. By thoughtfully presenting appropriately scaled challenges and rewards for these activities, more people will be willing to contribute and engage in a long term and beneficial way for themselves and their communities. This post was co-authored by Erik Johnston and Jessica GivensPartner narratives2019-05-29T00:00:00+00:002019-05-29T00:00:00+00:00https://opening-pathways.github.io/website/partner-narratives<p>As part of the work we’re focusing on in the <a href="http://openingpathways.org/grant-calendar-extension">grant extension period</a> (between now and September), we’ve been talking about the experience of traditional researchers partnering with patients. One thing we’ve identified is that these partners, like patients, also need resources, support, and encouragement as they do this work, especially as it is often not aligned with the traditional incentive structure for their work, either. One way of helping partners is by sharing stories and narratives from other partners who are doing similar types of work in partnership with patients. And of course, I also asked our team to write their own narratives to help draw out more insights from their experience on this Opening Pathways project. And I wasn’t disappointed - see below for the narratives and reflections from Erik, Eric, and John.</p>
<h2 id="erik-johnstons-partner-narrative">Erik Johnston’s partner narrative</h2>
<h3 id="lessons-from-a-humbled-researcher">Lessons from a humbled researcher</h3>
<p>In the years leading up to my involvement in the opening pathways project I was developing a broad research and teaching agenda to help people and communities become more involved in their own fates. The goal still is to give them a sense of what is possible, connect them with resources (money, expertise, projects, time…), and support their journey. On May 18th, 2016, at the Quantified Self Conference in San Diego, I saw the <a href="https://www.youtube.com/watch?v=FmNBUGe5JXY&feature=youtu.be&t=1h36m06s">most compelling talk</a> of my academic career. A community of people with a shared challenge, themselves living with type-one diabetes or in someone they cared about, had the sense that they could create a closed loop artificial pancreas that would dramatically improve their lives. It was a compelling talk because it had a unique presentation, a collection of authentic voices, and especially because it was the clearest manifestation of how I hope to help many types of communities. It was not hypothetical, they improved their own lives and shared it with others. I will never forget the dad that said that because of the OpenAPS community, for the first time since his son was diagnosed, he could sleep through the night. That family’s quality of life was tangibly better.</p>
<p>For me, three light bulbs went off. This was a new kind of academic opportunity, to use the scientific process with the objective of being useful (more than publishable). Second, the talk made vivid pathways of discovering and sharing better questions and treatments. And third, I wanted to help amplify the amazing work this communities of non-academics was doing so more people and communities could develop their own pathways.</p>
<p>I was sitting next to Eric Hekler during the talk and shared with him that this is the exact type of community our research talents could help. Over the next while (a year or more) I fell into the role of supportive ally while Eric and Dana pulled together the RWJF proposal to support Dana as PI in the first of its kind grant with the Robert Wood Johnson Foundation. I enjoyed the novelty of the grant, being involved, and I tried to help out when invited.</p>
<p>Over the course of the grant I have cherished our monthly meetings, the conversations between kind, curious, talented people have been fascinating and eye opening. I looked forward to the handful of times that the PI’s from Seattle, San Diego, Boston, and Tempe were able to get together and have a day advancing the work and listening respectfully to each other. <a href="http://openingpathways.org/designing-the-convening">And the event</a>, led by Dana and John, put on in DC, May 3rd, that brought together similar health communities has been transformative in how I see the relationship between academics and communities, especially health communities. It was in listening humbly at this event (and seeing some elite academics fail to)… where the origins of the humility audit for authentic and meaningful collaboration became core to my thinking of research in service of communities.</p>
<p>I do have two regrets. One I have known about all along, the other I was surprised to discover.</p>
<p>The regret I have known from the beginning is that I could not be an equal partner in this project because I could not spend the amount of time or energy that I believe this work deserves. This is in part a structural limitation. The funding for the grant is a primary source of income for Dana and the topic and the research are part of her identity and daily work. Conversely, funding wise, my part from the grant was about 1% of my income over the period of the grant. And while it was the first among dozens of projects, it still had to compete with the accountabilities I had on those other projects and the responsibilities that come with teaching, launching a new research center, and running a Ph.D. program. Although I put in probably 10 times the effort the budget suggested I should and I tried to always be present in conversations, meetings or workshops, I never felt I was doing enough. Knowing that an opportunity to work with this team and this community is so rare, I regret that my other responsibilities kept me from participating more fully.</p>
<p>The regret I just recently learned is in realizing that although my institution allowed this new type of grant (with Dana as PI) to be processed, that is very very different than prioritizing the work and supporting her as she deserves. At our final meeting of the grant as we were discussing other communities that could benefit from collaborating with academics, Dana wrote on the board, “It feels like a trap”. For some background, when Eric left ASU for San Diego, I took over as the main point-of contact at ASU. The combination of a new type of grant, multiple schools involved, both Eric and myself changing schools and/or universities mid grant, and a reduced role from our main administrative assistant led to an unusually high level of miscommunication, delays, and frustration in the execution of basic functions of the grant. At the same time ASU and RWJF were so excited about a new model of research that RWJF supported a second such grant to a different research team and DIY health community. What I did not realize was although we were able to process these grants, the ASU research infrastructure was not designed to prioritize, support, or even know the unique needs of patient researchers. I am learning the difference between the design of an institution that allows a behavior and one that supports a behavior. Because of what I have learned from this second regret, I will continue to work to change models of social embeddedness, community support, and academics from within by both doing and advocating.</p>
<p>I am unsure exactly what the end result of being involved in this work will be. I reference it regularly to guide more inclusive and supportive research models in other contexts. It has transformed my thinking by revealing unanticipated blind spots. I have also learned so much from Dana and the rest of our team. What I know with certainty is that I am grateful to Dana for making space for me on this pathway!</p>
<h2 id="eric-heklers-partner-narrative">Eric Hekler’s partner narrative</h2>
<h3 id="saving-mr-scientist">“Saving Mr. Scientist”</h3>
<p>For me, this began with seeing Dana give an incredible talk at the QSPH conference. I was really moved and thought that what she and the OpenAPS community were doing was fascinating, powerful, and important and I wanted to help. I went up afterward, first talking with Scott, to offer help and discussed the idea with also Brian Sivak and Steve Downs from RWJF; the goal was to explore possible ways of helping the group find funds and support. At first, my intuitions were that, because I was a “scientist,” one thing I could offer would be to do an “objective evaluation” of OpenAPS. If the evaluation worked out, it would help provide “validity” to the work Dana, Scott, et al were doing. When Dana and I first starting talking, that was the initial offer I provided with good intention.</p>
<p>My first hint that that might not have been right came when I spoke to Dana about this “offer” of “help.” In brief, she didn’t buy it and, while she was very kind as we didn’t know one another very well at that point, definitely was sending out cues that the “offer” was not what she wanted or needed. Based on that, I pivoted and asked something to the effect of, “how can I help?” This was the key starting point for me in my transition towards wanting to be not merely a researcher but also a partner to those I seek to support in my professional career. The first step was realizing that the most important thing I needed to do was to take the time to try and listen, observe, and understand as best as I could, rather than jump in with my thoughts, my interests, my agenda, etc.</p>
<p>As Dana and I and the team have been working together, I have had many many more changes of thinking, understanding, and learning, that has drastically impacted my understanding of what I see as my role as a “professional,” “scientist,” “educator,” or “professor,”; all labels and identities that are part of how I see myself. (and, in case you didn’t pick it up yet, every time I put something in quotes, it’s a story in my head; Often an identity for me or a resource I felt I could provide that ended up not being right and, likely, leading to unintended consequences).</p>
<p>The next important set of interactions were Dana and my many conversations while we were developing the grant. During these times, my initial intuitions were to be the “PI” because that’s what I was “supposed” to do. I was excited about the ideas and so I wrote out lengthy drafts of what the grant could be about and then “offered” them to Dana to review and edit. My thought was that, while we were discussing things together, my role was to “synthesize” and “translate” this work into something that RWJF would care about. During phone calls, initially, I felt the need to play the role of a “moderator” to “help” create “bridges” between Dana and the professionals we met with.</p>
<p>Thankfully, both Dana and Paul Tarini, with wisdom and tact, helped me to understand a false story I was engaging in. In brief, we realized that this project was not my science but, instead, it was Dana’s. This meant that it made no sense that I was trying to lead. Dana, Paul, and I had a discussion about this and we decided to basically restart the process for all involved with a very clear focus that Dana is leading this; Dana is the PI. I distinctly remember the first phone conversation when we did this. The conversation started with me mansplaining what we already knew and agreed upon; thankfully, Paul, again, had the great wisdom to say to me effectively, “Eric. Stop. Dana, what do you want to talk about.” Even though I rationally understood what we were doing and why I didn’t get it emotionally and I fell into bad habits and traps.</p>
<p>My education only continued.</p>
<p>One of our key activities was to organize a convening to understand and build a space for differences in perspectives towards opening pathways for innovation. Some key insights and thoughts on this convening have already been written about quite a bit amongst our blogs. I wrote up my experience in a blog called <a href="http://openingpathways.org/bearing-witness">bearing witness</a>. To summarize, when doing the planning for the convening I, again, fell into the trap of thinking that my role in this was to be a “synthesizer” and to help “drive” the discussion. Instead, Dana and John assigned me the role of a notetaker. As I write in that blog post, this was a profoundly important role for me to take, personally and also for the meeting to achieve one key goal, which was equitable participation and contribution. In brief, if I had played my traditional role I would have, very likely, crowded out others’ thoughts. I needed to learn that, sometimes (perhaps often) the best thing I can do is sit, listen, and seek understanding, or what I called bear witness. In essence, that meeting gave me some emotional/experiential understanding of what it means to bear witness and the foundational importance of doing so, particularly as someone with strong relative and entrenched powers afforded to me by our culture.</p>
<p>After this meeting, Dana and I discussed this experience with Paul, Erik, and the team. Paul suggested we talk with others who have done work on issues of power and power differentials in society. We started to connect more with those individuals who work with people who experience marginalization and to work towards learning languages and ways of thinking that could help us to organize and understand our thinking. From this, I started to really hear of the powerful and important role of stories and storytelling, particularly being aware of my own stories.</p>
<p>As a behavioral scientist, I NEVER thought it was my role to discuss or understand my own subjective experience and, most definitely, I never thought it was appropriate nor even valuable for me to tell my stories and experiences as part of my professional career. Of course, that’s not exactly true as, whenever I give talks, I embed small stories. That said, I always thought that the stories were there just as a form of communication to make the “real ideas,” the “real wisdom” and the “real work” of science more easily understood by those who “don’t really understand science.” Prior to this project, stories were just a cheap and easy way to convey the “truly important” information that science offers. If stories were offered alone, they would be mere anecdote and, thus, should be brushed aside as secondary and unimportant until the “real science” can happen to generate “real insights.” As I hope you are picking up from me writing out my story right now, I don’t believe that personal stories should be relegated to the “anecdote” bucket but, instead, should be understood and valued for themselves. The key lesson in my journey was to learn how to know myself well enough so that I know when I may be bringing bias and problems into my work. Prior to this project, I had understood issues of bias rationally; now I’m starting to see how examining one’s story can actually help a person know when they are bringing themselves into a process vs. not.</p>
<p>I continue to learn more each and every day and feel so very grateful for it. To give you a sense of the most immediate lesson I experienced, you need to know a bit about the <a href="https://en.wikipedia.org/wiki/Dunning%E2%80%93Kruger_effect">Dunning-Kruger Effect</a>. The basic idea is that there are people who have high confidence and, simultaneously,low competence or, put slightly differently, high ignorance of a topic and, likely because they are ignorant, they don’t realize how much they don’t know about a topic, thus rating themselves higher on confidence in their knowledge of a topic. This idea, at least in my circles, is popping up all over the place, such as trying to understand <a href="https://www.psychologytoday.com/us/blog/mind-in-the-machine/201808/the-dunning-kruger-effect-may-help-explain-trumps-support">Donald Trump</a>, <a href="https://www.hbo.com/documentaries/the-inventor-out-for-blood-in-silicon-valley">Elizabeth Holmes</a> as a concrete example of the perils of the <a href="https://tbkconsult.com/silicon-valleys-rule-number-one-fake-it-to-you-make-it/">“fake it til you make” culture of Silicon Valley</a>; as a plausible explanation for Silicon Valley and beyond such as the <a href="https://newrepublic.com/article/153095/fyre-festival-huge-scam-netflixs-fyre-documentary-scam-too">failed Fyre Festival</a>, and even coming up around the possibility that <a href="https://nyti.ms/2HDsDip">people of higher social economic status may have inflated confidence compared to competence</a>. This concept is scaring the $^*& out of me as it suggests that people who are ignorant are confidently ignorant, thus not allowing feedback to get in.</p>
<p>So… how does this connect with my story of being a partner for Dana and her work? At some point, Dana drew a simple little diagram for me during one of our discussions when I was particularly down on myself and not trusting my intuitions. Here’s a basic recreation of it:</p>
<p><img src="/assets/img/think_vs_actually_know.png" alt="Eric's drawing showing the difference between confidence and knowledge" /></p>
<p>She told me, without any judgment, that, when she and I first met, I was at the top of the upper left side of that diagram; I thought I knew a lot but, point-of-fact, I didn’t know all that much about the work we were going to do together. As we’ve worked together, according to Dana, I’ve moved along the X-axis. When Dana first brought this up to me, she was sharing with me her experience of me as someone that is learning and getting beyond high confidence, low knowledge.</p>
<p>This came up again during our last in-person meeting together as Dana, almost as an aside, said that I had fallen into the Dunning-Kruger Effect issue early on in our working together but that I’ve moved beyond it, at least in our current context. This might seem strange, but I had not personally made the linkage between the Dunning-Kruger Effect, the diagram Dana drew, and my lived experience. Prior to that, I held the belief that I was someone that would “know” when I was falling prey to this big problem. Obviously, though, that’s not the case. After some more reflection about this, I think Dana was right about me; through compassionate honesty and, I think, a strong relationship built on balanced power, mutual respect and trust, she helped me to make progress and get beyond my own experience of high confidence/low competence.</p>
<p>This last point has been the most profound for me to learn to date. As a white male who did my postdoctoral training at Stanford/Silicon Valley, my context and the signals I received from our culture set me up to be confidently ignorant. I’ve been told all my life that I’m, de facto, a “good person” who, through “my objective professionalism,” could offer “solutions” and “help” others. Now I’m not so sure, and I am so very thankful for my humility.</p>
<p>To be sure, this doesn’t mean I don’t want to keep trying to do what I can to be a good person; it just means that my understanding of power, professionalism, and objectivity, have all expanded far beyond what I had realized was possible prior to this work. I now have some emotional signals that can help me to feel when I may be falling into traps. I’m also now aware of the need to be mindful of things I may be blind to when starting a relationship with anyone. Rather than fall into the trap of trying to be objective, I realize now that each person’s subjective experience, or perhaps said more simply, recognizing that each person is human, is an important part of the process. When one person is “stronger,” “better,” “smarter,” or “more powerful” in some way, then the feedback loops that could feasibly reduce these inequities don’t occur. This results in confidently ignorant people with good intentions (i.e., people like me) doing more harm than good and having no clue that it’s happening.</p>
<p>I look forward to continuing this journey and am so very grateful for the time Dana has honored to give me. Like how I thought Mary Poppins was about Mary Poppins, I always thought this project was about Dana and helping patient innovators. While that remains true, again, just like how Mary Poppins was also a lot more about <a href="https://www.imdb.com/title/tt2140373/">Saving Mr. Banks,</a> I realize now that this project was also an opportunity to save Mr. Scientist (i.e., me) from my professional, objective, confident ignorance.</p>
<h2 id="john-harlows-partner-narrative">John Harlow’s partner narrative</h2>
<p><a href="https://youtu.be/5IsSpAOD6K8?t=50">Well, how did I get here?</a></p>
<p>I met Dana Lewis after being dumbfounded by the theatricality, style, and substance of her <a href="https://youtu.be/FmNBUGe5JXY?t=1h36m06s">2016 Quantified Self Public Health conference presentation</a>. After that showstopper, a member of my dissertation committee (Eric Hekler, still a collaborator on this very project) sought her out to try and build a partnership. Luckily, because Eric is exceptionally flexible and open to the perspectives and goals of others, he was able to pivot towards Dana’s interests, and invited her to give a <a href="https://drive.google.com/file/d/1IzyTkjUv3Og8alajDGTm1U7ALHaUkR5b/view?usp=sharing">talk</a> at Arizona State University (ASU), where Eric and I worked. This emerging collaboration eventually evolved into the Robert Wood Johnson Foundation (RWJF) grant: <a href="http://openingpathways.org/">Learning to Not Wait: Opening Pathways for Discovery, Research, and Innovation in Health (and Healthcare)</a>. This grant was made to Dana Lewis as the patient-Principal Investigator (PI), breaking new ground for ASU and RWJF alike. I explored <a href="http://openingpathways.org/pre-existing-culture">some of the team culture we built</a> leading up to applying for the grant on the Opening Pathways blog, and I’d like to share some further thoughts here about how and why our team found success.</p>
<p>From this project, I have learned that the barriers to entry for academics and institutional partners working with patients are “soft” skills, rather than the “hard” skills or technical scientific skills. The skills I have used most working with Dana are empathy, building trust, listening, and translation. The key to partnerships like these is empathizing with people whose experiences are not like one’s own, so I practiced active listening, radical openness, and refraining from using my own experience as a baseline. Building trust this way also requires translation by understanding how context differs, and building communication least likely to be misunderstood (different than most accurate!), and most likely to make sense and be accessible to its intended audience.</p>
<p>For example, I am less authoritative with Dana than with other partners. I have found that if people are taking on something new or outside their expertise or experience, they often gravitate to confidence. That has led me to be authoritative with partners, and to act as though I perceive myself to be an expert. I have benefitted from being confident and authoritative about my ideas, and having them open opportunities for me. (I do acknowledge the role of white, middle-class, cis-male privilege in this.) However, in working with Dana, I have reflected on the political economy of a patient-PI from outside the academy, and done my best to grant and respect her authority in our work. I have focused on listening and executing, rather than stating and defending my ideas, because I want to communicate and model that the PI power and decision-making lies with Dana.</p>
<p>What has surprised me most about this partnership is how deep the differences are between the academy and Dana’s baseline, and how I have learned over time what makes Dana’s experience so different. Another surprise was the appetite, intensity, and gratitude I felt at the Opening Pathways Convening. Most meetings are within a certain range of experience, but this was different, and it revealed how connectivity in this space could be a platform for future innovation.</p>
<p>I’ll close with this advice if you are considering taking on a project in collaboration with a patient: Listen. Give them your power. Support their vision.</p>Dana LewisDana@OpeningPathways.orgAs part of the work we’re focusing on in the grant extension period (between now and September), we’ve been talking about the experience of traditional researchers partnering with patients. One thing we’ve identified is that these partners, like patients, also need resources, support, and encouragement as they do this work, especially as it is often not aligned with the traditional incentive structure for their work, either. One way of helping partners is by sharing stories and narratives from other partners who are doing similar types of work in partnership with patients. And of course, I also asked our team to write their own narratives to help draw out more insights from their experience on this Opening Pathways project. And I wasn’t disappointed - see below for the narratives and reflections from Erik, Eric, and John. Erik Johnston’s partner narrative Lessons from a humbled researcher In the years leading up to my involvement in the opening pathways project I was developing a broad research and teaching agenda to help people and communities become more involved in their own fates. The goal still is to give them a sense of what is possible, connect them with resources (money, expertise, projects, time…), and support their journey. On May 18th, 2016, at the Quantified Self Conference in San Diego, I saw the most compelling talk of my academic career. A community of people with a shared challenge, themselves living with type-one diabetes or in someone they cared about, had the sense that they could create a closed loop artificial pancreas that would dramatically improve their lives. It was a compelling talk because it had a unique presentation, a collection of authentic voices, and especially because it was the clearest manifestation of how I hope to help many types of communities. It was not hypothetical, they improved their own lives and shared it with others. I will never forget the dad that said that because of the OpenAPS community, for the first time since his son was diagnosed, he could sleep through the night. That family’s quality of life was tangibly better. For me, three light bulbs went off. This was a new kind of academic opportunity, to use the scientific process with the objective of being useful (more than publishable). Second, the talk made vivid pathways of discovering and sharing better questions and treatments. And third, I wanted to help amplify the amazing work this communities of non-academics was doing so more people and communities could develop their own pathways. I was sitting next to Eric Hekler during the talk and shared with him that this is the exact type of community our research talents could help. Over the next while (a year or more) I fell into the role of supportive ally while Eric and Dana pulled together the RWJF proposal to support Dana as PI in the first of its kind grant with the Robert Wood Johnson Foundation. I enjoyed the novelty of the grant, being involved, and I tried to help out when invited. Over the course of the grant I have cherished our monthly meetings, the conversations between kind, curious, talented people have been fascinating and eye opening. I looked forward to the handful of times that the PI’s from Seattle, San Diego, Boston, and Tempe were able to get together and have a day advancing the work and listening respectfully to each other. And the event, led by Dana and John, put on in DC, May 3rd, that brought together similar health communities has been transformative in how I see the relationship between academics and communities, especially health communities. It was in listening humbly at this event (and seeing some elite academics fail to)… where the origins of the humility audit for authentic and meaningful collaboration became core to my thinking of research in service of communities. I do have two regrets. One I have known about all along, the other I was surprised to discover. The regret I have known from the beginning is that I could not be an equal partner in this project because I could not spend the amount of time or energy that I believe this work deserves. This is in part a structural limitation. The funding for the grant is a primary source of income for Dana and the topic and the research are part of her identity and daily work. Conversely, funding wise, my part from the grant was about 1% of my income over the period of the grant. And while it was the first among dozens of projects, it still had to compete with the accountabilities I had on those other projects and the responsibilities that come with teaching, launching a new research center, and running a Ph.D. program. Although I put in probably 10 times the effort the budget suggested I should and I tried to always be present in conversations, meetings or workshops, I never felt I was doing enough. Knowing that an opportunity to work with this team and this community is so rare, I regret that my other responsibilities kept me from participating more fully. The regret I just recently learned is in realizing that although my institution allowed this new type of grant (with Dana as PI) to be processed, that is very very different than prioritizing the work and supporting her as she deserves. At our final meeting of the grant as we were discussing other communities that could benefit from collaborating with academics, Dana wrote on the board, “It feels like a trap”. For some background, when Eric left ASU for San Diego, I took over as the main point-of contact at ASU. The combination of a new type of grant, multiple schools involved, both Eric and myself changing schools and/or universities mid grant, and a reduced role from our main administrative assistant led to an unusually high level of miscommunication, delays, and frustration in the execution of basic functions of the grant. At the same time ASU and RWJF were so excited about a new model of research that RWJF supported a second such grant to a different research team and DIY health community. What I did not realize was although we were able to process these grants, the ASU research infrastructure was not designed to prioritize, support, or even know the unique needs of patient researchers. I am learning the difference between the design of an institution that allows a behavior and one that supports a behavior. Because of what I have learned from this second regret, I will continue to work to change models of social embeddedness, community support, and academics from within by both doing and advocating. I am unsure exactly what the end result of being involved in this work will be. I reference it regularly to guide more inclusive and supportive research models in other contexts. It has transformed my thinking by revealing unanticipated blind spots. I have also learned so much from Dana and the rest of our team. What I know with certainty is that I am grateful to Dana for making space for me on this pathway! Eric Hekler’s partner narrative “Saving Mr. Scientist” For me, this began with seeing Dana give an incredible talk at the QSPH conference. I was really moved and thought that what she and the OpenAPS community were doing was fascinating, powerful, and important and I wanted to help. I went up afterward, first talking with Scott, to offer help and discussed the idea with also Brian Sivak and Steve Downs from RWJF; the goal was to explore possible ways of helping the group find funds and support. At first, my intuitions were that, because I was a “scientist,” one thing I could offer would be to do an “objective evaluation” of OpenAPS. If the evaluation worked out, it would help provide “validity” to the work Dana, Scott, et al were doing. When Dana and I first starting talking, that was the initial offer I provided with good intention. My first hint that that might not have been right came when I spoke to Dana about this “offer” of “help.” In brief, she didn’t buy it and, while she was very kind as we didn’t know one another very well at that point, definitely was sending out cues that the “offer” was not what she wanted or needed. Based on that, I pivoted and asked something to the effect of, “how can I help?” This was the key starting point for me in my transition towards wanting to be not merely a researcher but also a partner to those I seek to support in my professional career. The first step was realizing that the most important thing I needed to do was to take the time to try and listen, observe, and understand as best as I could, rather than jump in with my thoughts, my interests, my agenda, etc. As Dana and I and the team have been working together, I have had many many more changes of thinking, understanding, and learning, that has drastically impacted my understanding of what I see as my role as a “professional,” “scientist,” “educator,” or “professor,”; all labels and identities that are part of how I see myself. (and, in case you didn’t pick it up yet, every time I put something in quotes, it’s a story in my head; Often an identity for me or a resource I felt I could provide that ended up not being right and, likely, leading to unintended consequences). The next important set of interactions were Dana and my many conversations while we were developing the grant. During these times, my initial intuitions were to be the “PI” because that’s what I was “supposed” to do. I was excited about the ideas and so I wrote out lengthy drafts of what the grant could be about and then “offered” them to Dana to review and edit. My thought was that, while we were discussing things together, my role was to “synthesize” and “translate” this work into something that RWJF would care about. During phone calls, initially, I felt the need to play the role of a “moderator” to “help” create “bridges” between Dana and the professionals we met with. Thankfully, both Dana and Paul Tarini, with wisdom and tact, helped me to understand a false story I was engaging in. In brief, we realized that this project was not my science but, instead, it was Dana’s. This meant that it made no sense that I was trying to lead. Dana, Paul, and I had a discussion about this and we decided to basically restart the process for all involved with a very clear focus that Dana is leading this; Dana is the PI. I distinctly remember the first phone conversation when we did this. The conversation started with me mansplaining what we already knew and agreed upon; thankfully, Paul, again, had the great wisdom to say to me effectively, “Eric. Stop. Dana, what do you want to talk about.” Even though I rationally understood what we were doing and why I didn’t get it emotionally and I fell into bad habits and traps. My education only continued. One of our key activities was to organize a convening to understand and build a space for differences in perspectives towards opening pathways for innovation. Some key insights and thoughts on this convening have already been written about quite a bit amongst our blogs. I wrote up my experience in a blog called bearing witness. To summarize, when doing the planning for the convening I, again, fell into the trap of thinking that my role in this was to be a “synthesizer” and to help “drive” the discussion. Instead, Dana and John assigned me the role of a notetaker. As I write in that blog post, this was a profoundly important role for me to take, personally and also for the meeting to achieve one key goal, which was equitable participation and contribution. In brief, if I had played my traditional role I would have, very likely, crowded out others’ thoughts. I needed to learn that, sometimes (perhaps often) the best thing I can do is sit, listen, and seek understanding, or what I called bear witness. In essence, that meeting gave me some emotional/experiential understanding of what it means to bear witness and the foundational importance of doing so, particularly as someone with strong relative and entrenched powers afforded to me by our culture. After this meeting, Dana and I discussed this experience with Paul, Erik, and the team. Paul suggested we talk with others who have done work on issues of power and power differentials in society. We started to connect more with those individuals who work with people who experience marginalization and to work towards learning languages and ways of thinking that could help us to organize and understand our thinking. From this, I started to really hear of the powerful and important role of stories and storytelling, particularly being aware of my own stories. As a behavioral scientist, I NEVER thought it was my role to discuss or understand my own subjective experience and, most definitely, I never thought it was appropriate nor even valuable for me to tell my stories and experiences as part of my professional career. Of course, that’s not exactly true as, whenever I give talks, I embed small stories. That said, I always thought that the stories were there just as a form of communication to make the “real ideas,” the “real wisdom” and the “real work” of science more easily understood by those who “don’t really understand science.” Prior to this project, stories were just a cheap and easy way to convey the “truly important” information that science offers. If stories were offered alone, they would be mere anecdote and, thus, should be brushed aside as secondary and unimportant until the “real science” can happen to generate “real insights.” As I hope you are picking up from me writing out my story right now, I don’t believe that personal stories should be relegated to the “anecdote” bucket but, instead, should be understood and valued for themselves. The key lesson in my journey was to learn how to know myself well enough so that I know when I may be bringing bias and problems into my work. Prior to this project, I had understood issues of bias rationally; now I’m starting to see how examining one’s story can actually help a person know when they are bringing themselves into a process vs. not. I continue to learn more each and every day and feel so very grateful for it. To give you a sense of the most immediate lesson I experienced, you need to know a bit about the Dunning-Kruger Effect. The basic idea is that there are people who have high confidence and, simultaneously,low competence or, put slightly differently, high ignorance of a topic and, likely because they are ignorant, they don’t realize how much they don’t know about a topic, thus rating themselves higher on confidence in their knowledge of a topic. This idea, at least in my circles, is popping up all over the place, such as trying to understand Donald Trump, Elizabeth Holmes as a concrete example of the perils of the “fake it til you make” culture of Silicon Valley; as a plausible explanation for Silicon Valley and beyond such as the failed Fyre Festival, and even coming up around the possibility that people of higher social economic status may have inflated confidence compared to competence. This concept is scaring the $^*& out of me as it suggests that people who are ignorant are confidently ignorant, thus not allowing feedback to get in. So… how does this connect with my story of being a partner for Dana and her work? At some point, Dana drew a simple little diagram for me during one of our discussions when I was particularly down on myself and not trusting my intuitions. Here’s a basic recreation of it: She told me, without any judgment, that, when she and I first met, I was at the top of the upper left side of that diagram; I thought I knew a lot but, point-of-fact, I didn’t know all that much about the work we were going to do together. As we’ve worked together, according to Dana, I’ve moved along the X-axis. When Dana first brought this up to me, she was sharing with me her experience of me as someone that is learning and getting beyond high confidence, low knowledge. This came up again during our last in-person meeting together as Dana, almost as an aside, said that I had fallen into the Dunning-Kruger Effect issue early on in our working together but that I’ve moved beyond it, at least in our current context. This might seem strange, but I had not personally made the linkage between the Dunning-Kruger Effect, the diagram Dana drew, and my lived experience. Prior to that, I held the belief that I was someone that would “know” when I was falling prey to this big problem. Obviously, though, that’s not the case. After some more reflection about this, I think Dana was right about me; through compassionate honesty and, I think, a strong relationship built on balanced power, mutual respect and trust, she helped me to make progress and get beyond my own experience of high confidence/low competence. This last point has been the most profound for me to learn to date. As a white male who did my postdoctoral training at Stanford/Silicon Valley, my context and the signals I received from our culture set me up to be confidently ignorant. I’ve been told all my life that I’m, de facto, a “good person” who, through “my objective professionalism,” could offer “solutions” and “help” others. Now I’m not so sure, and I am so very thankful for my humility. To be sure, this doesn’t mean I don’t want to keep trying to do what I can to be a good person; it just means that my understanding of power, professionalism, and objectivity, have all expanded far beyond what I had realized was possible prior to this work. I now have some emotional signals that can help me to feel when I may be falling into traps. I’m also now aware of the need to be mindful of things I may be blind to when starting a relationship with anyone. Rather than fall into the trap of trying to be objective, I realize now that each person’s subjective experience, or perhaps said more simply, recognizing that each person is human, is an important part of the process. When one person is “stronger,” “better,” “smarter,” or “more powerful” in some way, then the feedback loops that could feasibly reduce these inequities don’t occur. This results in confidently ignorant people with good intentions (i.e., people like me) doing more harm than good and having no clue that it’s happening. I look forward to continuing this journey and am so very grateful for the time Dana has honored to give me. Like how I thought Mary Poppins was about Mary Poppins, I always thought this project was about Dana and helping patient innovators. While that remains true, again, just like how Mary Poppins was also a lot more about Saving Mr. Banks, I realize now that this project was also an opportunity to save Mr. Scientist (i.e., me) from my professional, objective, confident ignorance. John Harlow’s partner narrative Well, how did I get here? I met Dana Lewis after being dumbfounded by the theatricality, style, and substance of her 2016 Quantified Self Public Health conference presentation. After that showstopper, a member of my dissertation committee (Eric Hekler, still a collaborator on this very project) sought her out to try and build a partnership. Luckily, because Eric is exceptionally flexible and open to the perspectives and goals of others, he was able to pivot towards Dana’s interests, and invited her to give a talk at Arizona State University (ASU), where Eric and I worked. This emerging collaboration eventually evolved into the Robert Wood Johnson Foundation (RWJF) grant: Learning to Not Wait: Opening Pathways for Discovery, Research, and Innovation in Health (and Healthcare). This grant was made to Dana Lewis as the patient-Principal Investigator (PI), breaking new ground for ASU and RWJF alike. I explored some of the team culture we built leading up to applying for the grant on the Opening Pathways blog, and I’d like to share some further thoughts here about how and why our team found success. From this project, I have learned that the barriers to entry for academics and institutional partners working with patients are “soft” skills, rather than the “hard” skills or technical scientific skills. The skills I have used most working with Dana are empathy, building trust, listening, and translation. The key to partnerships like these is empathizing with people whose experiences are not like one’s own, so I practiced active listening, radical openness, and refraining from using my own experience as a baseline. Building trust this way also requires translation by understanding how context differs, and building communication least likely to be misunderstood (different than most accurate!), and most likely to make sense and be accessible to its intended audience. For example, I am less authoritative with Dana than with other partners. I have found that if people are taking on something new or outside their expertise or experience, they often gravitate to confidence. That has led me to be authoritative with partners, and to act as though I perceive myself to be an expert. I have benefitted from being confident and authoritative about my ideas, and having them open opportunities for me. (I do acknowledge the role of white, middle-class, cis-male privilege in this.) However, in working with Dana, I have reflected on the political economy of a patient-PI from outside the academy, and done my best to grant and respect her authority in our work. I have focused on listening and executing, rather than stating and defending my ideas, because I want to communicate and model that the PI power and decision-making lies with Dana. What has surprised me most about this partnership is how deep the differences are between the academy and Dana’s baseline, and how I have learned over time what makes Dana’s experience so different. Another surprise was the appetite, intensity, and gratitude I felt at the Opening Pathways Convening. Most meetings are within a certain range of experience, but this was different, and it revealed how connectivity in this space could be a platform for future innovation. I’ll close with this advice if you are considering taking on a project in collaboration with a patient: Listen. Give them your power. Support their vision.Reflections and thoughts on the funder-grantee relationship from funder perspective2019-04-25T00:00:00+00:002019-04-25T00:00:00+00:00https://opening-pathways.github.io/website/reflections-funder-grantee-relationship-funder-perspective<p><em>This is Paul’s post reflecting on the funder/grantee relationship, & my response unedited to his comments. His was written for an internal RWJF audience. You can see my post & his unedited comments in response to that <a href="/reflections-funder-grantee-relationship">here</a>.</em></p>
<h2 id="lessons-from-funding-people">Lessons From Funding People</h2>
<p>The PI on this grant, Dana Lewis, is a citizen-scientist who is not affiliated with an institution…she doesn’t work at a non-profit, in academia, she isn’t a consultant. She’s a person, living her life, doing cool stuff.</p>
<p>Our systems are set up to make grants to institutions and organizations, not people. That makes it hard to work with individuals who have good ideas, though we can work around that…in this case we made the grant to an academic institution which in turn contracted with Dana. I’m not going to focus on the fact that our systems aren’t set up to work with individuals, I’m going to focus on a different issue I see: that our culture has blind spots when it comes to working with individuals. </p>
<p>In the spirit of figuring out how to do better on the next grant to a non-affiliated person, Dana and I interrogated our relationship…actually, Emmy Ganos graciously interrogated both of us. I may be the only one who needed to learn these lessons, but in the event someone else can benefit, below are the key take-aways: </p>
<p>Non-affiliated people may not have established benches and existing resources to help them with the grantee-grantor relationship and processes. Because they’re not grounded in institutions, they don’t have colleagues they can talk with about getting and managing grants and managing relationships with funders. There were instances early during the grant where I assumed Dana had some institutional relationships she could draw on, but as an outsider, she couldn’t just walk down the hall to the development office or the communications office. Any casual suggestion—“just do a budget revision for that”—took Dana more work (See the comment below about the three-way relationship.). </p>
<p>Another thing that you don’t get when you’re not grounded in an institution is emotional support. We (I) don’t often think about P.I.s needing some emotional support during the course of the grant, but it happened during this one (Dana raised this during our conversation with Emmy, so I’m not speaking out of school.). Day-to-day, Dana was working alone. Beyond that, while I thought of us as having a 1:1 relationship, I think she saw it as a 1:Person-Who-Represents-A-Rich-And-Powerful-Foundation relationship. I needed to recognize that providing some support and validation (from me personally and from the institution through me) was important to my relationship with Dana and lean in to providing that support. </p>
<p>The three-way relationship is complex. Because we don’t give grants to individuals, we needed to have a third party be the fiscal agent. Our grant here is to Arizona State University, which then contracted with Dana. Per our system, the officially-designated PI for the grant is on staff at ASU (he’s also working on the grant, which is good). But Dana is the in-truth PI on this. So she has to deal with two institutions—ASU and RWJF. And her formal relationship with both institutions is indirect. As someone outside of the grantee institution, Dana has no internal power there. “I wasn’t always taken seriously because I’m not the senior-most professor at ASU,” she said. To a large extent, she’s at the mercy of the ASU bureaucracy. So if a report is late, be patient, because it’s in the hands of the bureaucracy.</p>
<p>We could look for a structural fix for this problem. We could decide to create an easier grant making and managing path for individuals. That could include establishing a relationship with a fiscal intermediary that understood our interests in facilitating/enabling this category of grantee and then develop guidelines and processes with them. It would still produce an indirect relationship with the person doing the work, but it could be a more responsive one.</p>
<p>You need to have some up-front conversations and to anticipate some just-in-time conversations. At the beginning of the grant, Dana expected that I would establish some guardrails for the work and be more directive about how the work should get done. From my perspective, the proposal she submitted established the guardrails and I trusted her judgement about how the work should get done (If I didn’t trust her judgement, I wouldn’t have been comfortable with us making the grant). Telling her that I trusted her judgement up front would have helped. The just-in-time conversations are about things like how to do a budget revision, or reporting requirements. I think talking about such things before they’re relevant is information without context, so the conversations are not as useful early on. That said, letting them know early on that we can be flexible in how the work of the grant gets done is probably helpful. </p>
<p>Reflecting more, it might have helped for me to do a more intentional on-boarding, though it would be complicated by the three-way relationship. I could have talked to her more up front about our processes and requirements, but I couldn’t do the same for ASU’s. One thought here is for me to have identified a point person in ASU’s grants management office and establish a relationship with them. Then I could have interceded on Dana’s behalf when, for instance, it took ASU months to approve a sub-contract for legal consulting.</p>
<p>Another thing I needed to understand better is what it really means for Dana to be only 40% time on the grant. That means that the rest of her time is her life, including working to earn money. So a simple suggestion of, here’s someone to talk with about that; or, here’s a good article to read—she actually has to find the time to do that work. As Dana said to me once, “I don’t get paid to do that…Someone in academia, that’s part of their job. I have to figure out when I can do that extra work that I’m not getting paid for.” So don’t assume non-affiliated people can easily act on suggestions and recommendations you offer. And be clear about when it’s just a casual suggestion and when it’s strong recommendation. </p>
<p>Finally, I need to acknowledge Dana’s bravery. She has been frank with me about when she was frustrated, angry, struggling with something or someone, happy about a result. She has done this as an un-affiliated person with relatively little formal power in the relationships that were enabling her to do the work about which she was passionate. It’s making for a better experience and, I hope, a better project. </p>
<hr />
<p><em>(Below is Dana’s untouched response to the above. <a href="/reflections-funder-grantee-relationship">Her own post reflecting on this process is available here</a>, along with my untouched response to her comments.)</em>
</p>
<blockquote>
<p>I appreciate Paul’s reflection on our mediated conversation, and think he articulated much of our discussion accurately.</p>
<p>One thing I think is apparent to me now is that this grant feels like a four-way process – it involves me, RWJF, ASU, and my co-PI’s. It has often felt like the co-PI’s are the fourth element in this relationship. I am also new to working with these co-PI’s, and so therefore there are also challenges in working with people established in the system who are attempting to support and help this work. There are a lot of benefits (such as enabling me to get this grant by being tied to an academic institution (ASU)), but I also think some of the challenges and dynamics resulting from “having to have” co-PI’s (rather than having them serve as contributors to the work) are worth exploring at a future point, too, in the conversation of how we might design the process to better support individuals and their ideas.</p>
<p>Paul has framed several of our conversations that I would categorize as “hard” as “emotional”. I worried then, and still worry now, about the stigma of having so many emotional or hard conversations that were about relationships and power dynamics and examining the assumptions and infrastructure of the current system. Paul was and is amazingly supportive for having those conversations, and acknowledged early on that he realized they would be a part of our work, but I worry that I was “lucky” with Paul and that may put future patient work at risk if funders feel like there would be “extra work” they’d have to do with patient/independent/unaffiliated grantees. The answer to that is yes there likely is and maybe there should be; but I, like Paul, think it was worth it and made for a better project and better future work. However, I wonder how we might put this in context of the overall value while acknowledging that perhaps the relationships and work look different and require different areas of effort compared to a traditional grant. Like everything else, there are tradeoffs.</p>
<p>Similarly, I think patients/unaffiliated researchers may be looked at as lacking in some areas, such as organizational know-how. I happen to come from a background of working in communications for non-profit health systems, and in my career had evolved from an individual contributor to managing teams, multi-million dollar budgets, and leading internal communications as well as external efforts. As a result, I am deeply trenched in experience for working within complicated political systems and organizations and bureaucracy. I think the challenge for me in this grant work was being fully removed from any organization involved in the work. Therefore, I ended up in this four-way relationship where you have to learn multiple organizational dynamics and build new relationships on all fronts, all while doing a new role (being PI) for the first time without having any real, articulated power in any of those systems…and all while paying attention to being the “first” and knowing the decisions about what battles to fight and what to focus on will help or hurt other unaffiliated and patient researchers in the future. It’s less about me being “unknowledgeable” and more about being “currently un-tethered” to an organization. On the flip side, another researcher may be tethered to an organization but be newer to their career/working in this space. My knowledge and past experiences enable me to see how the process is so hard currently to someone with my expertise, and recognize it would be even harder and in some cases insurmountable to many other potential patient and unaffiliated researchers who don’t share my background – and that’s something we should pay attention to and use as input to build better processes for the future.</p>
<p>I am very appreciative of Paul’s work with me on this grant, and thankful to RWJF for being brave as an organization to fund this work and these new ways of working. Thank you to the many individuals at RWJF who have supported our work behind the scenes!</p>
</blockquote>Dana LewisDana@OpeningPathways.orgThis is Paul’s post reflecting on the funder/grantee relationship, & my response unedited to his comments. His was written for an internal RWJF audience. You can see my post & his unedited comments in response to that here. Lessons From Funding People The PI on this grant, Dana Lewis, is a citizen-scientist who is not affiliated with an institution…she doesn’t work at a non-profit, in academia, she isn’t a consultant. She’s a person, living her life, doing cool stuff. Our systems are set up to make grants to institutions and organizations, not people. That makes it hard to work with individuals who have good ideas, though we can work around that…in this case we made the grant to an academic institution which in turn contracted with Dana. I’m not going to focus on the fact that our systems aren’t set up to work with individuals, I’m going to focus on a different issue I see: that our culture has blind spots when it comes to working with individuals. In the spirit of figuring out how to do better on the next grant to a non-affiliated person, Dana and I interrogated our relationship…actually, Emmy Ganos graciously interrogated both of us. I may be the only one who needed to learn these lessons, but in the event someone else can benefit, below are the key take-aways: Non-affiliated people may not have established benches and existing resources to help them with the grantee-grantor relationship and processes. Because they’re not grounded in institutions, they don’t have colleagues they can talk with about getting and managing grants and managing relationships with funders. There were instances early during the grant where I assumed Dana had some institutional relationships she could draw on, but as an outsider, she couldn’t just walk down the hall to the development office or the communications office. Any casual suggestion—“just do a budget revision for that”—took Dana more work (See the comment below about the three-way relationship.). Another thing that you don’t get when you’re not grounded in an institution is emotional support. We (I) don’t often think about P.I.s needing some emotional support during the course of the grant, but it happened during this one (Dana raised this during our conversation with Emmy, so I’m not speaking out of school.). Day-to-day, Dana was working alone. Beyond that, while I thought of us as having a 1:1 relationship, I think she saw it as a 1:Person-Who-Represents-A-Rich-And-Powerful-Foundation relationship. I needed to recognize that providing some support and validation (from me personally and from the institution through me) was important to my relationship with Dana and lean in to providing that support. The three-way relationship is complex. Because we don’t give grants to individuals, we needed to have a third party be the fiscal agent. Our grant here is to Arizona State University, which then contracted with Dana. Per our system, the officially-designated PI for the grant is on staff at ASU (he’s also working on the grant, which is good). But Dana is the in-truth PI on this. So she has to deal with two institutions—ASU and RWJF. And her formal relationship with both institutions is indirect. As someone outside of the grantee institution, Dana has no internal power there. “I wasn’t always taken seriously because I’m not the senior-most professor at ASU,” she said. To a large extent, she’s at the mercy of the ASU bureaucracy. So if a report is late, be patient, because it’s in the hands of the bureaucracy. We could look for a structural fix for this problem. We could decide to create an easier grant making and managing path for individuals. That could include establishing a relationship with a fiscal intermediary that understood our interests in facilitating/enabling this category of grantee and then develop guidelines and processes with them. It would still produce an indirect relationship with the person doing the work, but it could be a more responsive one. You need to have some up-front conversations and to anticipate some just-in-time conversations. At the beginning of the grant, Dana expected that I would establish some guardrails for the work and be more directive about how the work should get done. From my perspective, the proposal she submitted established the guardrails and I trusted her judgement about how the work should get done (If I didn’t trust her judgement, I wouldn’t have been comfortable with us making the grant). Telling her that I trusted her judgement up front would have helped. The just-in-time conversations are about things like how to do a budget revision, or reporting requirements. I think talking about such things before they’re relevant is information without context, so the conversations are not as useful early on. That said, letting them know early on that we can be flexible in how the work of the grant gets done is probably helpful. Reflecting more, it might have helped for me to do a more intentional on-boarding, though it would be complicated by the three-way relationship. I could have talked to her more up front about our processes and requirements, but I couldn’t do the same for ASU’s. One thought here is for me to have identified a point person in ASU’s grants management office and establish a relationship with them. Then I could have interceded on Dana’s behalf when, for instance, it took ASU months to approve a sub-contract for legal consulting. Another thing I needed to understand better is what it really means for Dana to be only 40% time on the grant. That means that the rest of her time is her life, including working to earn money. So a simple suggestion of, here’s someone to talk with about that; or, here’s a good article to read—she actually has to find the time to do that work. As Dana said to me once, “I don’t get paid to do that…Someone in academia, that’s part of their job. I have to figure out when I can do that extra work that I’m not getting paid for.” So don’t assume non-affiliated people can easily act on suggestions and recommendations you offer. And be clear about when it’s just a casual suggestion and when it’s strong recommendation. Finally, I need to acknowledge Dana’s bravery. She has been frank with me about when she was frustrated, angry, struggling with something or someone, happy about a result. She has done this as an un-affiliated person with relatively little formal power in the relationships that were enabling her to do the work about which she was passionate. It’s making for a better experience and, I hope, a better project. (Below is Dana’s untouched response to the above. Her own post reflecting on this process is available here, along with my untouched response to her comments.) I appreciate Paul’s reflection on our mediated conversation, and think he articulated much of our discussion accurately. One thing I think is apparent to me now is that this grant feels like a four-way process – it involves me, RWJF, ASU, and my co-PI’s. It has often felt like the co-PI’s are the fourth element in this relationship. I am also new to working with these co-PI’s, and so therefore there are also challenges in working with people established in the system who are attempting to support and help this work. There are a lot of benefits (such as enabling me to get this grant by being tied to an academic institution (ASU)), but I also think some of the challenges and dynamics resulting from “having to have” co-PI’s (rather than having them serve as contributors to the work) are worth exploring at a future point, too, in the conversation of how we might design the process to better support individuals and their ideas. Paul has framed several of our conversations that I would categorize as “hard” as “emotional”. I worried then, and still worry now, about the stigma of having so many emotional or hard conversations that were about relationships and power dynamics and examining the assumptions and infrastructure of the current system. Paul was and is amazingly supportive for having those conversations, and acknowledged early on that he realized they would be a part of our work, but I worry that I was “lucky” with Paul and that may put future patient work at risk if funders feel like there would be “extra work” they’d have to do with patient/independent/unaffiliated grantees. The answer to that is yes there likely is and maybe there should be; but I, like Paul, think it was worth it and made for a better project and better future work. However, I wonder how we might put this in context of the overall value while acknowledging that perhaps the relationships and work look different and require different areas of effort compared to a traditional grant. Like everything else, there are tradeoffs. Similarly, I think patients/unaffiliated researchers may be looked at as lacking in some areas, such as organizational know-how. I happen to come from a background of working in communications for non-profit health systems, and in my career had evolved from an individual contributor to managing teams, multi-million dollar budgets, and leading internal communications as well as external efforts. As a result, I am deeply trenched in experience for working within complicated political systems and organizations and bureaucracy. I think the challenge for me in this grant work was being fully removed from any organization involved in the work. Therefore, I ended up in this four-way relationship where you have to learn multiple organizational dynamics and build new relationships on all fronts, all while doing a new role (being PI) for the first time without having any real, articulated power in any of those systems…and all while paying attention to being the “first” and knowing the decisions about what battles to fight and what to focus on will help or hurt other unaffiliated and patient researchers in the future. It’s less about me being “unknowledgeable” and more about being “currently un-tethered” to an organization. On the flip side, another researcher may be tethered to an organization but be newer to their career/working in this space. My knowledge and past experiences enable me to see how the process is so hard currently to someone with my expertise, and recognize it would be even harder and in some cases insurmountable to many other potential patient and unaffiliated researchers who don’t share my background – and that’s something we should pay attention to and use as input to build better processes for the future. I am very appreciative of Paul’s work with me on this grant, and thankful to RWJF for being brave as an organization to fund this work and these new ways of working. Thank you to the many individuals at RWJF who have supported our work behind the scenes!Reflections and thoughts on the funder-grantee relationship2019-04-25T00:00:00+00:002019-04-25T00:00:00+00:00https://opening-pathways.github.io/website/reflections-funder-grantee-relationship<p><em>Tl;dr - We’ve been giving a lot of thought to the meta aspects of the funder-grantee relationship, and this discussion is what emerged.</em></p>
<p>Each month, I have the opportunity to have a conversation with my point of contact, Paul Tarini, at the Robert Wood Johnson Foundation (RWJF). These conversations are quite wide ranging, from talking about specific aspects of project work (e.g. designing the convening) or meta-discussions about the way we’re doing work (like power dynamics, etc.). One of the meta discussions that has emerged repeatedly has been the novel aspects of RWJF funding a patient as PI for the first time. Paul and I have lightly touched on this topic off and on, but a few months ago, we mutually agreed that it would be valuable to more deeply explore this discussion, and to perhaps do it in a way where we could then share it with the rest of RWJF and the broader world to learn from our experiences.</p>
<p>How might we do that? Well, we discussed being on a panel together at a conference; writing a joint article for a publication; etc. But we also decided we should start with a structured, mediated conversation with a 3rd person to ask questions and guide the discussion. Paul nominated his colleague, Emmy Ganos, who kindly agreed to be our discussion leader and note taker. Paul and I each independently brainstormed some questions beforehand for the discussion.</p>
<p>Here is the list we landed on for the conversation:</p>
<p><strong>Paul’s questions:</strong></p>
<ul>
<li>What didn’t RWJF understand about working with an unaffiliated citizen-scientist?</li>
<li>Are there specific needs you have that we can’t accommodate? How has the design of our system and processes made it hard for you? Anything we have in place make it easy for you?</li>
<li>If you could re-design the formal structure and process, what would you do differently?</li>
<li>What did Paul not understand about working with a citizen-scientist?</li>
<li>How receptive was he to your ideas about the project, how to conduct it, what was important?</li>
<li>If you could re-design Paul, what would you do differently?</li>
</ul>
<p><strong>My questions:</strong></p>
<ul>
<li>What expectations or assumptions did the citizen scientist have that Paul was surprised by? Were any expectations misaligned with Paul’s?</li>
<li>What cultural/grant norms and unspoken rules had to be spoken and stated? Which of these still applied; and which may be ignored or adapted?</li>
<li>What processes could be put into place to help develop relationship between Grantee and PM? If there are some resources already, how might those need to be, or could be, presented to the citizen scientist grantee?</li>
<li>How might onboarding to grant be different for first time citizen scientist PI, or similar to another first-time PI?</li>
<li>What characteristics or elements in a project might you look for in a future citizen scientist? Does this differ from traditionally-led projects?</li>
<li>What skills might be missing, or should be additionally strengthened, for future citizen scientist PI’s?</li>
<li>Some of the questions ended up being quite similar, some of them ended up being unique to our relative perspectives.</li>
</ul>
<p>The discussion began with me answering the question about what RWJF did not understand about my work - and I spent a lot of time trying to re-articulate the challenges of being an “independent researcher” and how that influenced the process and our work. I’m running this grant through ASU, which has a series of challenges with me not being able to advocate on behalf of the grant inside ASU. I have co-PI’s, but they’re busy and this is not their primary project. So for a variety of reasons, the power dynamics are such that even with the grant, I am mostly powerless in the minutiae of accessing and moving money around. This was a frustrating point for me, personally, (it took forever to get paid the first time, and my payments are often delayed by 2-3 months), as well as subcontractors to the grant work. This is something that mostly subsided after the first ~6 months once everyone was settled into the grant, but it slowed down the work immensely and sucked up a lot of my time. I am only budgeted 40% of my time for this project, and so I would (and did) have to choose between sacrificing my other time outside the grant and spending extra unpaid time to move things along, or choosing to sacrifice the actual work of the grant and delay some aspects of the work. I didn’t like being forced to make that choice.</p>
<p>Along with being independent, being new and a first-time PI also came into play. All of these aspects meant I was unsure about what to expect and ask from Paul/RWJF, and I was also looking for more guidance, including emotional support, than perhaps is typical for a grantee. This might’ve been influenced too by the fact that our grant work was less concrete (do x, after you figure out y and z and the needs of abc) than a typical grant project might have been (do x by doing y). During this call, Paul emphasized that this surprised him, and we talked about a few things that might help ameliorate this in the future.</p>
<p>I was surprised by Paul commenting on how things sometimes required a more thorough explanation than other grantees might have needed. I’m not sure how much of that was me being a patient PI vs. a first time PI vs. being a very literal person who wants to make sure I understood what we were talking about, so that’s hard for me to unpack as clearly. It did emphasize to me that the on-boarding experience of our relationship could have been more thorough, not just around discussing the project and what type of support Paul could provide, but building the working relationship including getting a better understanding of personalities and skill strengths and weaknesses up front. This is something we intuited over time, but we might have benefited from somehow having more of those conversations up front.</p>
<p>One of the other things Paul and I both talked quite a bit about was how “emotional” the conversations were. His words there, not mine. I would refer to them as “hard” conversations, and I still struggled with hearing them categorized as “emotional” because there’s a lot of stigma around being female, and a non-traditional professional, a first-time PI, etc. I feel like I have the weight of the world on my shoulders, not only to do the work and do it well to my own high standards, but I’m very cognizant of the fact that future patient grant funding could be at stake depending on how I work, how I react, etc. It may influence RWJF’s willingness to fund this type of work, as well as other funding organizations. That’s… a lot of pressure. It’s always top of mind for me, and that’s led me to make decisions and push for things where it wasn’t about my needs/desires but about improving the space for all patients and future patient researchers. That was and still really is hard for me, given the seemingly unequal power dynamics that are often in play. It’s not that RWJF did anything “wrong”, but this first-time experience of getting a grant and having a 3-way relationship with ASU as the grantee further diluted the power dynamics and everything often felt more complicated than sitting down and getting the work done. So the “emotional” work has often been the hardest for me to do - but I think it’s also been the most valuable and yielded the most insights for all of us about this work and how we need to continually work to redesign the “system” and processes in place around this type of grant-funded work.</p>
<p>I think the other thing I learned from this conversation was how I was looking for feedback from Paul/RWJF that they don’t normally give. They provided the grant; they don’t usually give feedback for how the work is being done. Giving the grant is an indication of trust and support in of itself. But working as an independent, I was still looking for feedback at a high level for the direction of the project. I got it if I asked super specific questions to get Paul’s opinion and draw it out, but didn’t get as much feedback otherwise as I would have expected. I was also surprised that when I submitted my annual report, I never got a peep back from RWJF. It feels like there’s a disconnect between the things that are requested of me to fulfill the requirements of the grant process, and those actually being useful things. I’m still not sure if anyone has looked at the annual report I submitted, and what if anything it does. (I’m also really glad we’ve documented our work in this blog along the way, because it’s another way to share our progress and our thinking out loud, and get different types of feedback from diverse perspectives. Having written so much about our work along the way also made it easy to recap our work from the past year. PS - <a href="http://openingpathways.org/annual-report">you can see the annual report content we submitted here</a>, and the rest of our thinking out loud on the blog <a href="http://openingpathways.org/blog/">here</a>).</p>
<p>I talked a lot about unequal power dynamics, the challenges I had as a patient PI - and I’m being very vulnerable and open, and have been from the start about how hard this has been as a process and for me personally. But I also come in with a lot of skills from my professional background (communications, working in large healthcare organizations, etc.), that gave me a lot of insight to how organizations worked and how to deal with and navigate bureaucracy. I’m not completely without skill/experience, and so the frustrations I have with bureaucracy are not just that I’m unequipped and inexperienced (which might be common assumptions of “patient” researchers or “new PI”s) - but my experience shows me how hard the process is and that we can do better. I may have “survived”, but I want future patient researchers to be able to “thrive” and not be bogged down by this extra administrative set of headaches that may limit the power of the impact of their work.</p>
<p>In summary, I found the “mediated” conversation with Paul quite valuable and I’m glad we did it. I think, because of our relationship, we could have had a conversation between the two of us and gotten equal value from it, but those who didn’t feel as comfortable between their funder contact (or who had a different relationship for any reason), having the “mediator” would have been valuable. I also really appreciate that Emmy took super detailed notes for us, because I was so focused on participating in the conversation that I would have been distracted by taking notes. This type of conversation is something I’m going to recommend to others who are exploring new/novel partnerships and grants like this, and it’s also a conversation I want to have with <a href="http://openingpathways.org/meet-the-team/">the rest of our Opening Pathways team</a> near the end of our grant to look back at how we did the work, and not only the obvious outputs from our work.</p>
<hr />
<p>Thank you to Emmy Ganos for leading our conversation; and thanks to Paul, as always, for being willing to experiment with new processes and have all kinds of different conversations as part of our grant.</p>
<hr />
<p><em>(Paul and I also agreed that we would each write up some thoughts on this process, share it with each other, and give each other a chance to write a response that would be posted, unedited, alongside our original post. Above is my original post, and below is Paul’s response, unedited/untouched by me. I’ve asked for permission to post Paul’s original post and my response, too, and will post that in a separate post and link it back here as well, for full transparency. The untouched response was Paul’s idea, and I really appreciated that, too.)</em></p>
<blockquote>
<p>Here are my reflections on Dana’s post…</p>
<p>Dana did a better job of creating a complete product than I did. Because her version has better context-setting, I think it does a better job of inviting readers in to the experience than mine does. Both pieces have an amount of reportage in them and that I think is fairly similar. That’s a good thing, as it means we heard the same things in largely the same ways. I’m glad we’re not talking past each other.</p>
<p>There are two things in Dana’s piece that gave me pause. The first is her discussion of the word “emotional.” I did not think about the way the word is used to stigmatize and delegitimize women when I used it. I should have thought that through and been more careful in my language. Sorry.</p>
<p>But I want to talk through was I was trying to explain. I was trying to capture what was different in the conversations I have with Dana and her colleagues from the ones I have with PIs on other grants (female and male). Those other conversations focus on the operational aspects of the project and often also have an idea-sharing part to them. The calls with Dana et al also do this. But then they occasionally have this additional content. I’m calling the emotional/hard stuff content for a reason: I want to put it on par with the other content, the operational aspects and idea-sharing.</p>
<p>This content included conversations about the relationships and perspectives in play as the work got done; and, people also showed/expressed their feelings about those relationships and perspectives. This content was not labile, that is, emotional in the stigmatizing use of the word. It was considered, forthright, honest and constructive…and I think it helped advance the work, just as our discussion of the more operational aspects of the project did.</p>
<p>So: it’s my bad for using ‘emotional’ as a descriptor. It’s the project’s good that we’ve included the content in our conversations. Thanks, Dana.</p>
<p>The second thing that gave me pause: “I was also surprised that when I submitted my annual report, I never got a peep back from RWJF.” Yipes. “It feels like there’s a disconnect between the things that are requested of me to fulfill the requirements of the grant process, and those actually being useful things.” Whew. Dana’s right in that she didn’t hear from me about it or from the rest. I read it, but because of the good communication we have, I was looking for something new, not shared during our regular calls. Since I didn’t read anything surprising, I didn’t raise the annual report as something we needed to discuss. But I should have acknowledged it. Sorry. I also think Dana’s right in that there’s a disconnect between what I need to do a good job for her as her program officer and what my institution needs from PIs as it administers a philanthropic enterprise. Or, at least, there’s some duplication. As of this writing, I’m not sure how to resolve that…the truth is that for most bureaucracies, creating flexible and sensitive requirements is an unnatural act. I know that’s not very satisfying.</p>
<p>I want to echo Dana’s thanks to my colleague Emmy Ganos for facilitating our conversation, she did a great job. Also, I want to thank Dana being willing to engage in this reflection. For all the discussion in these posts about power dynamics, my experience with Dana is she’s not intimidated in the least. But she is occasionally annoyed, and that’s a good and instructive thing.</p>
</blockquote>Dana LewisDana@OpeningPathways.orgTl;dr - We’ve been giving a lot of thought to the meta aspects of the funder-grantee relationship, and this discussion is what emerged. Each month, I have the opportunity to have a conversation with my point of contact, Paul Tarini, at the Robert Wood Johnson Foundation (RWJF). These conversations are quite wide ranging, from talking about specific aspects of project work (e.g. designing the convening) or meta-discussions about the way we’re doing work (like power dynamics, etc.). One of the meta discussions that has emerged repeatedly has been the novel aspects of RWJF funding a patient as PI for the first time. Paul and I have lightly touched on this topic off and on, but a few months ago, we mutually agreed that it would be valuable to more deeply explore this discussion, and to perhaps do it in a way where we could then share it with the rest of RWJF and the broader world to learn from our experiences. How might we do that? Well, we discussed being on a panel together at a conference; writing a joint article for a publication; etc. But we also decided we should start with a structured, mediated conversation with a 3rd person to ask questions and guide the discussion. Paul nominated his colleague, Emmy Ganos, who kindly agreed to be our discussion leader and note taker. Paul and I each independently brainstormed some questions beforehand for the discussion. Here is the list we landed on for the conversation: Paul’s questions: What didn’t RWJF understand about working with an unaffiliated citizen-scientist? Are there specific needs you have that we can’t accommodate? How has the design of our system and processes made it hard for you? Anything we have in place make it easy for you? If you could re-design the formal structure and process, what would you do differently? What did Paul not understand about working with a citizen-scientist? How receptive was he to your ideas about the project, how to conduct it, what was important? If you could re-design Paul, what would you do differently? My questions: What expectations or assumptions did the citizen scientist have that Paul was surprised by? Were any expectations misaligned with Paul’s? What cultural/grant norms and unspoken rules had to be spoken and stated? Which of these still applied; and which may be ignored or adapted? What processes could be put into place to help develop relationship between Grantee and PM? If there are some resources already, how might those need to be, or could be, presented to the citizen scientist grantee? How might onboarding to grant be different for first time citizen scientist PI, or similar to another first-time PI? What characteristics or elements in a project might you look for in a future citizen scientist? Does this differ from traditionally-led projects? What skills might be missing, or should be additionally strengthened, for future citizen scientist PI’s? Some of the questions ended up being quite similar, some of them ended up being unique to our relative perspectives. The discussion began with me answering the question about what RWJF did not understand about my work - and I spent a lot of time trying to re-articulate the challenges of being an “independent researcher” and how that influenced the process and our work. I’m running this grant through ASU, which has a series of challenges with me not being able to advocate on behalf of the grant inside ASU. I have co-PI’s, but they’re busy and this is not their primary project. So for a variety of reasons, the power dynamics are such that even with the grant, I am mostly powerless in the minutiae of accessing and moving money around. This was a frustrating point for me, personally, (it took forever to get paid the first time, and my payments are often delayed by 2-3 months), as well as subcontractors to the grant work. This is something that mostly subsided after the first ~6 months once everyone was settled into the grant, but it slowed down the work immensely and sucked up a lot of my time. I am only budgeted 40% of my time for this project, and so I would (and did) have to choose between sacrificing my other time outside the grant and spending extra unpaid time to move things along, or choosing to sacrifice the actual work of the grant and delay some aspects of the work. I didn’t like being forced to make that choice. Along with being independent, being new and a first-time PI also came into play. All of these aspects meant I was unsure about what to expect and ask from Paul/RWJF, and I was also looking for more guidance, including emotional support, than perhaps is typical for a grantee. This might’ve been influenced too by the fact that our grant work was less concrete (do x, after you figure out y and z and the needs of abc) than a typical grant project might have been (do x by doing y). During this call, Paul emphasized that this surprised him, and we talked about a few things that might help ameliorate this in the future. I was surprised by Paul commenting on how things sometimes required a more thorough explanation than other grantees might have needed. I’m not sure how much of that was me being a patient PI vs. a first time PI vs. being a very literal person who wants to make sure I understood what we were talking about, so that’s hard for me to unpack as clearly. It did emphasize to me that the on-boarding experience of our relationship could have been more thorough, not just around discussing the project and what type of support Paul could provide, but building the working relationship including getting a better understanding of personalities and skill strengths and weaknesses up front. This is something we intuited over time, but we might have benefited from somehow having more of those conversations up front. One of the other things Paul and I both talked quite a bit about was how “emotional” the conversations were. His words there, not mine. I would refer to them as “hard” conversations, and I still struggled with hearing them categorized as “emotional” because there’s a lot of stigma around being female, and a non-traditional professional, a first-time PI, etc. I feel like I have the weight of the world on my shoulders, not only to do the work and do it well to my own high standards, but I’m very cognizant of the fact that future patient grant funding could be at stake depending on how I work, how I react, etc. It may influence RWJF’s willingness to fund this type of work, as well as other funding organizations. That’s… a lot of pressure. It’s always top of mind for me, and that’s led me to make decisions and push for things where it wasn’t about my needs/desires but about improving the space for all patients and future patient researchers. That was and still really is hard for me, given the seemingly unequal power dynamics that are often in play. It’s not that RWJF did anything “wrong”, but this first-time experience of getting a grant and having a 3-way relationship with ASU as the grantee further diluted the power dynamics and everything often felt more complicated than sitting down and getting the work done. So the “emotional” work has often been the hardest for me to do - but I think it’s also been the most valuable and yielded the most insights for all of us about this work and how we need to continually work to redesign the “system” and processes in place around this type of grant-funded work. I think the other thing I learned from this conversation was how I was looking for feedback from Paul/RWJF that they don’t normally give. They provided the grant; they don’t usually give feedback for how the work is being done. Giving the grant is an indication of trust and support in of itself. But working as an independent, I was still looking for feedback at a high level for the direction of the project. I got it if I asked super specific questions to get Paul’s opinion and draw it out, but didn’t get as much feedback otherwise as I would have expected. I was also surprised that when I submitted my annual report, I never got a peep back from RWJF. It feels like there’s a disconnect between the things that are requested of me to fulfill the requirements of the grant process, and those actually being useful things. I’m still not sure if anyone has looked at the annual report I submitted, and what if anything it does. (I’m also really glad we’ve documented our work in this blog along the way, because it’s another way to share our progress and our thinking out loud, and get different types of feedback from diverse perspectives. Having written so much about our work along the way also made it easy to recap our work from the past year. PS - you can see the annual report content we submitted here, and the rest of our thinking out loud on the blog here). I talked a lot about unequal power dynamics, the challenges I had as a patient PI - and I’m being very vulnerable and open, and have been from the start about how hard this has been as a process and for me personally. But I also come in with a lot of skills from my professional background (communications, working in large healthcare organizations, etc.), that gave me a lot of insight to how organizations worked and how to deal with and navigate bureaucracy. I’m not completely without skill/experience, and so the frustrations I have with bureaucracy are not just that I’m unequipped and inexperienced (which might be common assumptions of “patient” researchers or “new PI”s) - but my experience shows me how hard the process is and that we can do better. I may have “survived”, but I want future patient researchers to be able to “thrive” and not be bogged down by this extra administrative set of headaches that may limit the power of the impact of their work. In summary, I found the “mediated” conversation with Paul quite valuable and I’m glad we did it. I think, because of our relationship, we could have had a conversation between the two of us and gotten equal value from it, but those who didn’t feel as comfortable between their funder contact (or who had a different relationship for any reason), having the “mediator” would have been valuable. I also really appreciate that Emmy took super detailed notes for us, because I was so focused on participating in the conversation that I would have been distracted by taking notes. This type of conversation is something I’m going to recommend to others who are exploring new/novel partnerships and grants like this, and it’s also a conversation I want to have with the rest of our Opening Pathways team near the end of our grant to look back at how we did the work, and not only the obvious outputs from our work. Thank you to Emmy Ganos for leading our conversation; and thanks to Paul, as always, for being willing to experiment with new processes and have all kinds of different conversations as part of our grant. (Paul and I also agreed that we would each write up some thoughts on this process, share it with each other, and give each other a chance to write a response that would be posted, unedited, alongside our original post. Above is my original post, and below is Paul’s response, unedited/untouched by me. I’ve asked for permission to post Paul’s original post and my response, too, and will post that in a separate post and link it back here as well, for full transparency. The untouched response was Paul’s idea, and I really appreciated that, too.) Here are my reflections on Dana’s post… Dana did a better job of creating a complete product than I did. Because her version has better context-setting, I think it does a better job of inviting readers in to the experience than mine does. Both pieces have an amount of reportage in them and that I think is fairly similar. That’s a good thing, as it means we heard the same things in largely the same ways. I’m glad we’re not talking past each other. There are two things in Dana’s piece that gave me pause. The first is her discussion of the word “emotional.” I did not think about the way the word is used to stigmatize and delegitimize women when I used it. I should have thought that through and been more careful in my language. Sorry. But I want to talk through was I was trying to explain. I was trying to capture what was different in the conversations I have with Dana and her colleagues from the ones I have with PIs on other grants (female and male). Those other conversations focus on the operational aspects of the project and often also have an idea-sharing part to them. The calls with Dana et al also do this. But then they occasionally have this additional content. I’m calling the emotional/hard stuff content for a reason: I want to put it on par with the other content, the operational aspects and idea-sharing. This content included conversations about the relationships and perspectives in play as the work got done; and, people also showed/expressed their feelings about those relationships and perspectives. This content was not labile, that is, emotional in the stigmatizing use of the word. It was considered, forthright, honest and constructive…and I think it helped advance the work, just as our discussion of the more operational aspects of the project did. So: it’s my bad for using ‘emotional’ as a descriptor. It’s the project’s good that we’ve included the content in our conversations. Thanks, Dana. The second thing that gave me pause: “I was also surprised that when I submitted my annual report, I never got a peep back from RWJF.” Yipes. “It feels like there’s a disconnect between the things that are requested of me to fulfill the requirements of the grant process, and those actually being useful things.” Whew. Dana’s right in that she didn’t hear from me about it or from the rest. I read it, but because of the good communication we have, I was looking for something new, not shared during our regular calls. Since I didn’t read anything surprising, I didn’t raise the annual report as something we needed to discuss. But I should have acknowledged it. Sorry. I also think Dana’s right in that there’s a disconnect between what I need to do a good job for her as her program officer and what my institution needs from PIs as it administers a philanthropic enterprise. Or, at least, there’s some duplication. As of this writing, I’m not sure how to resolve that…the truth is that for most bureaucracies, creating flexible and sensitive requirements is an unnatural act. I know that’s not very satisfying. I want to echo Dana’s thanks to my colleague Emmy Ganos for facilitating our conversation, she did a great job. Also, I want to thank Dana being willing to engage in this reflection. For all the discussion in these posts about power dynamics, my experience with Dana is she’s not intimidated in the least. But she is occasionally annoyed, and that’s a good and instructive thing.Lived experience and scientific consensus2019-04-12T00:00:00+00:002019-04-12T00:00:00+00:00https://opening-pathways.github.io/website/lived_experience_consensus<p>As <a href="/patient-in-the-cage">Dana highlighted</a>, a problem exists: “patients” and “subjects” feel like they are the subject of conversations about science, not part of those conversations. For all of the reasons Dana highlighted, this is not good for people formerly known as patients/subjects (henceforth, just called a person or people).</p>
<p>As I’ve thought about this, I’ve come to what some may view as a radical conclusion:</p>
<p>Excluding humans with lived experiences about an issue, such as experiences with an illness, hurts the trustworthiness of scientific consensus related to the issue.</p>
<p>To understand how, it’s important to understand the concept of scientific consensus. <a href="https://www.ted.com/talks/naomi_oreskes_why_we_should_believe_in_science/transcript?language=en">Naomi Oreskes’s TED talk, Why we should trust scientists,</a> provides an accessible overview. I personally like a complementary but a bit more technical formulation from <a href="https://www.jstor.org/stable/pdf/41931809.pdf?casa_token=PzLbIJrejLsAAAAA:vN5lCcMyeKjZqGxsMvz2tiEmcBCE6ztQXBay-UJ12FfwfoIP-ZXIv1Tgr4k2JBgbLoBxDorhCOWAZEVXeZdPtU1mjeckAu52RVOsuktffDistOBURg">Miller</a>. Miller argues that scientific consensus is knowledge-based (or what I’m calling trustworthy) when the following three independent conditions are adequately present:</p>
<p>The Social Calibration Condition - all parties to the consensus are committed to using the same evidential standards, formalism and ontological schemes;
The Apparent Consilience of Evidence Condition (henceforth we will call this one the Convergent Evidence Condition) - the consensus is based on varied lines of evidence that all seem to agree with each other;
The Social Diversity Condition - the consensus is socially diverse.</p>
<p>What does that mean?</p>
<p>People need to want to work together (social calibration condition), use a wide range of methods to understand an issue (convergent evidence condition) and include a diversity of different perspectives and explanations when trying to understand an issue (social diversity condition). Each of these conditions exists in a gradient, meaning you can always have potentially more or less social diversity, for example. The more each of those conditions are true when creating consensus, the more trustworthy that consensus is likely to be.</p>
<p>How is this linked to Dana’s experience and why does it matter?</p>
<p>First, people’s lived experiences are one way of knowing a phenomenon (convergent evidence condition). Second, people’s explanations about what might be going on in their lives expands social diversity (social diversity condition). If the scientific community can find ways to meaningfully integrate lived experience and plausible explanations from people (social calibration condition), then any consensus that emerges will likely be more trusted by people, particularly those who will use the information.</p>
<p>(And as a quick aside, some researchers might be thinking right now, “we do ethnographic and other qualitative work to incorporate this lived experience into our thinking.” Yes, that is true. What would happen if people themselves had ways to translate their lived experience into plausible observations that could be incorporated into scientific discourse? This line of thinking is complementary to, not supplanting, ethnographic and qualitative work.)</p>
<p>Let me unpack that a bit.</p>
<p>What is better understood in a person’s lived experience that is lacking in other methods (convergent evidence condition)? History and context.</p>
<p>A person’s lived experience is the accumulation of their life. Even the best datasets do not include all of this information. Further, a person has a far more intimate understanding about their own context. For example, a researcher looking at someone else’s data may see a “weird” data point and label it an “outlier” to be ignored. For the person with the lived experience, that data point can easily be understood in context, such as “oh yeah… that’s when I went to my sister’s wedding; I ate too much because the cake was SOO good.” The more “outliers” (to the researcher), which are understandable to the person, the more important it is for a person to be able to contextualize these data. Without people contextualizing there data, it is quite plausible that, quite literally, these outliers data points will be completely excluded from analyses or adjusted in some way to fit the expectations of the researcher. This, in a microcosm, is just like what Dana illustrated in her patient in the cage visualization related to people’s “data” not getting incorporated into the scientific evidence-base.</p>
<p>The insights about history and context from lived experience are complementary to other methods. For example, lived experience can contextualize traditional methods such as epidemiological research or clinical trials. When lived experience and traditional methods are combined, they offer a broader understanding of a problem and, thus, convergent evidence condition is strengthened.</p>
<p>What is gained from listening to each person’s explanations (social diversity condition)?</p>
<p>For science, if lived experience provides a person with a unique understanding of how history and context impact their lives, then their explanations could also be unique. This means that social diversity of possible hypotheses to explain a phenomenon increase when people are involved. With fewer unique perspectives, a confirmatory circle of consensus can emerge between professionals that is contradictory to people’s experiences and explanations. Again, this is exactly what Dana illustrated in her patient in the cage diagram. This would be bad for science as alternative hypotheses and explanations would never be explored and supported or ruled out.</p>
<p>There’s also a social/cultural dimension here that may be even more important.</p>
<p>If people don’t feel heard, even if scientific consensus is technically right, a person will likely not trust it.</p>
<p>For example, imagine a person meeting with a medical doctor and raising concerns about vaccinations. The person offers what, in their mind, is a plausible causal explanation on how vaccinations could increase the risk of autism for their child. If the doctor responds by saying something to the effect of, “that’s not right; just trust the science,” then the person won’t feel heard or acknowledged and their beliefs will, in all likelihood, further move towards thinking and believing anti-vaccination arguments.</p>
<p>The alternative is to listen.</p>
<p>I know firsthand as I’ve had conversations with people flirting with anti-vaccination ideas. Rather than dismiss them, I listened carefully and slowly but surely worked through each part of their explanations and beliefs, often using their own data, explanations, and evidence as the starting point of our discussions, with the goal of checking assumptions and the veracity of each claim. I consciously worked through this, never rejecting a notion out of hand, but, instead, considering it carefully on its own merit relative to what might be known from other sources of information (i.e., I used the convergent evidence condition principles). Through those conversations, I’ve helped some people feel comfortable vaccinating their child. I did this by honoring who they were as humans and the good intent they had. They weren’t bad people, they just hadn’t worked through the details enough.</p>
<p>In my view, listening just might be one of the key ways to increase trust in science more broadly across society.</p>
<p>Put this all together, and, in my view, there’s an important need for science to meaningfully include those with lived experience in scientific discourse.</p>
<p>To be sure, this line of thinking requires a lot of work.</p>
<p>What are the methods and processes that can be used to formally incorporate lived experience into scientific discourse? What are the assumptions that undergird it as a source of evidence and explanation? What are the biases that are baked into the insights gleaned from lived experience? What are the complementary methods with complementary assumptions that balance out lived experience? How are person’s explanations articulated and/or elicited such that they can be part of the scientific discourse? How do we build a space for robust social calibration that includes not just professionals but also these individuals with lived experience who seek to join the discussion? How do we determine a “valid” perspective and, thus, exclude or rule out misinformation, #FakeNews, and the like? How do we have conversations with people who may be experiencing the <a href="https://en.wikipedia.org/wiki/Dunning%E2%80%93Kruger_effect">Dunning-Kruger effect</a> (i.e., they have an inflated sense of confidence that is not linked with reality)? How might we be able to identify those who are thoughtfully engaging in the discourse vs. those who may be trying to only benefit from it (e.g., for financial gain or for social status and prestige)?</p>
<p>These are not easy questions to answer. But, the current default option in health sciences (and, likely science in general), which largely ignores those with valid lived experiences, is not right, thus setting up the need for us to work through these thorny issues.</p>
<p>The time is now to figure out how to include persons with lived experience in scientific discourse.</p>Eric HeklerAs Dana highlighted, a problem exists: “patients” and “subjects” feel like they are the subject of conversations about science, not part of those conversations. For all of the reasons Dana highlighted, this is not good for people formerly known as patients/subjects (henceforth, just called a person or people). As I’ve thought about this, I’ve come to what some may view as a radical conclusion: Excluding humans with lived experiences about an issue, such as experiences with an illness, hurts the trustworthiness of scientific consensus related to the issue. To understand how, it’s important to understand the concept of scientific consensus. Naomi Oreskes’s TED talk, Why we should trust scientists, provides an accessible overview. I personally like a complementary but a bit more technical formulation from Miller. Miller argues that scientific consensus is knowledge-based (or what I’m calling trustworthy) when the following three independent conditions are adequately present: The Social Calibration Condition - all parties to the consensus are committed to using the same evidential standards, formalism and ontological schemes; The Apparent Consilience of Evidence Condition (henceforth we will call this one the Convergent Evidence Condition) - the consensus is based on varied lines of evidence that all seem to agree with each other; The Social Diversity Condition - the consensus is socially diverse. What does that mean? People need to want to work together (social calibration condition), use a wide range of methods to understand an issue (convergent evidence condition) and include a diversity of different perspectives and explanations when trying to understand an issue (social diversity condition). Each of these conditions exists in a gradient, meaning you can always have potentially more or less social diversity, for example. The more each of those conditions are true when creating consensus, the more trustworthy that consensus is likely to be. How is this linked to Dana’s experience and why does it matter? First, people’s lived experiences are one way of knowing a phenomenon (convergent evidence condition). Second, people’s explanations about what might be going on in their lives expands social diversity (social diversity condition). If the scientific community can find ways to meaningfully integrate lived experience and plausible explanations from people (social calibration condition), then any consensus that emerges will likely be more trusted by people, particularly those who will use the information. (And as a quick aside, some researchers might be thinking right now, “we do ethnographic and other qualitative work to incorporate this lived experience into our thinking.” Yes, that is true. What would happen if people themselves had ways to translate their lived experience into plausible observations that could be incorporated into scientific discourse? This line of thinking is complementary to, not supplanting, ethnographic and qualitative work.) Let me unpack that a bit. What is better understood in a person’s lived experience that is lacking in other methods (convergent evidence condition)? History and context. A person’s lived experience is the accumulation of their life. Even the best datasets do not include all of this information. Further, a person has a far more intimate understanding about their own context. For example, a researcher looking at someone else’s data may see a “weird” data point and label it an “outlier” to be ignored. For the person with the lived experience, that data point can easily be understood in context, such as “oh yeah… that’s when I went to my sister’s wedding; I ate too much because the cake was SOO good.” The more “outliers” (to the researcher), which are understandable to the person, the more important it is for a person to be able to contextualize these data. Without people contextualizing there data, it is quite plausible that, quite literally, these outliers data points will be completely excluded from analyses or adjusted in some way to fit the expectations of the researcher. This, in a microcosm, is just like what Dana illustrated in her patient in the cage visualization related to people’s “data” not getting incorporated into the scientific evidence-base. The insights about history and context from lived experience are complementary to other methods. For example, lived experience can contextualize traditional methods such as epidemiological research or clinical trials. When lived experience and traditional methods are combined, they offer a broader understanding of a problem and, thus, convergent evidence condition is strengthened. What is gained from listening to each person’s explanations (social diversity condition)? For science, if lived experience provides a person with a unique understanding of how history and context impact their lives, then their explanations could also be unique. This means that social diversity of possible hypotheses to explain a phenomenon increase when people are involved. With fewer unique perspectives, a confirmatory circle of consensus can emerge between professionals that is contradictory to people’s experiences and explanations. Again, this is exactly what Dana illustrated in her patient in the cage diagram. This would be bad for science as alternative hypotheses and explanations would never be explored and supported or ruled out. There’s also a social/cultural dimension here that may be even more important. If people don’t feel heard, even if scientific consensus is technically right, a person will likely not trust it. For example, imagine a person meeting with a medical doctor and raising concerns about vaccinations. The person offers what, in their mind, is a plausible causal explanation on how vaccinations could increase the risk of autism for their child. If the doctor responds by saying something to the effect of, “that’s not right; just trust the science,” then the person won’t feel heard or acknowledged and their beliefs will, in all likelihood, further move towards thinking and believing anti-vaccination arguments. The alternative is to listen. I know firsthand as I’ve had conversations with people flirting with anti-vaccination ideas. Rather than dismiss them, I listened carefully and slowly but surely worked through each part of their explanations and beliefs, often using their own data, explanations, and evidence as the starting point of our discussions, with the goal of checking assumptions and the veracity of each claim. I consciously worked through this, never rejecting a notion out of hand, but, instead, considering it carefully on its own merit relative to what might be known from other sources of information (i.e., I used the convergent evidence condition principles). Through those conversations, I’ve helped some people feel comfortable vaccinating their child. I did this by honoring who they were as humans and the good intent they had. They weren’t bad people, they just hadn’t worked through the details enough. In my view, listening just might be one of the key ways to increase trust in science more broadly across society. Put this all together, and, in my view, there’s an important need for science to meaningfully include those with lived experience in scientific discourse. To be sure, this line of thinking requires a lot of work. What are the methods and processes that can be used to formally incorporate lived experience into scientific discourse? What are the assumptions that undergird it as a source of evidence and explanation? What are the biases that are baked into the insights gleaned from lived experience? What are the complementary methods with complementary assumptions that balance out lived experience? How are person’s explanations articulated and/or elicited such that they can be part of the scientific discourse? How do we build a space for robust social calibration that includes not just professionals but also these individuals with lived experience who seek to join the discussion? How do we determine a “valid” perspective and, thus, exclude or rule out misinformation, #FakeNews, and the like? How do we have conversations with people who may be experiencing the Dunning-Kruger effect (i.e., they have an inflated sense of confidence that is not linked with reality)? How might we be able to identify those who are thoughtfully engaging in the discourse vs. those who may be trying to only benefit from it (e.g., for financial gain or for social status and prestige)? These are not easy questions to answer. But, the current default option in health sciences (and, likely science in general), which largely ignores those with valid lived experiences, is not right, thus setting up the need for us to work through these thorny issues. The time is now to figure out how to include persons with lived experience in scientific discourse.Patient in the cage2019-04-12T00:00:00+00:002019-04-12T00:00:00+00:00https://opening-pathways.github.io/website/patient-in-the-cage<p>We need to redesign research to involve equitable participation of ALL stakeholders who have relevant interests and perspectives. That motivation is at the heart of our project and is why, as we began thinking about this grant work in the very early days, we began to reach out to talk to, share our ideas with, and learn from others who are working in the general areas we had identified. We had opportunities to talk to many researchers, clinicians, and doers in a lot of fields, all with various ideas and expertise. While most of the discussions we had were incredibly positive, supportive, and helpful in making sure we were not recreating the wheel, one of those conversations is still sticking in my mind.</p>
<p>This conversation, like the others, was about sharing our ideas and plans, learning what this person was working on, and discussing any mutual areas of interest that came up in that discussion. However, this conversation went in a different direction than the others. First, Eric Hekler & I had a chance to talk about some of our planned work. Then, this person began explaining their work, and speaking about me and some of my previous work in the third person - while I was still actively on the call - to Eric. Their description of my work was incorrect. I felt awkward and unsure what to do in that situation, beyond trying to correct the factual inaccuracies. Being spoken about in third person left me feeling as if I couldn’t speak up during this interaction, which I otherwise would do. Afterward, I checked in with Eric to see if he had heard what I had heard - did I imagine the whole thing? - and to gauge if I was overreacting. Eric felt, equally, that something strange had occurred in the call. The more I reflected on this conversation, the more frustrated and awkward I felt about it.</p>
<p>For our team, this interaction spurred on a lot of conversations both before we submitted the grant and afterward. It partially inspired us to recognize that what we wanted was to take a deeper look at the system (barrels, and the barrel makers), rather than individuals (apples), <a href="http://openingpathways.org/apples-barrels-barrel-makers">per our ‘apple or barrel’ perspective, as articulated in this blog post</a>. It also got us to think about the <a href="http://openingpathways.org/spectrums-of-perspective">diversity of perspectives</a>, as well as the <a href="http://openingpathways.org/pre-existing-culture">aspects of the team</a> that existed prior to the project, which enabled us to work more effectively together, particularly with me as the PI.</p>
<p>I needed to work through all of this before I felt ready to write about this. I wanted to make sure I had enough separation from this interaction so that I could think less about this particular conversation and, instead, aligned with the goals of my work & our team, more about the system that resulted in a particular person talking the way they did.</p>
<p>Returning to the story, to help think through what about this situation was bothering me, and to be able to discuss it with Eric and the rest of the team, I started to draw. This actually became one of the first drawings I did, as a way to sort out my thoughts & impressions about the problem I was sensing. <em>(And probably the first ‘sticky note science’ I started doing for this project - see <a href="https://twitter.com/danamlewis/status/1038114092920135680">here</a> for an unrelated example.)</em> I am by no means an artist and don’t really have any drawing skills, but it was a useful process to see what bubbled up.</p>
<p>It helped me recognize that I felt disrespected and unheard when I was being spoken about in the third person while I was on the call. Upon further reflection, I realized that, in the conversation, it felt as though I was “the subject” that “the researchers” were “doing research” on and about.</p>
<p>I felt like I wasn’t part of the conversation but, instead, a subject of conversation.</p>
<p>This is a problem that is systemic, and larger than any individual. As another example, Eric reminded me that it also happened in the very first conversation Eric and I ever had about this potential work. When we first met, Eric’s offer was essentially that he could do a research study. The implication was that if Eric did the research on us, that research would, somehow, legitimize me, my work, the community’s work, and our collective perspectives. I would be a passive “research subject.” Thankfully, Eric had enough empathic regard to sense that his “offer” was not right and, instead, after hearing my response, pivoted to asking the question, “How can I help?”. We wouldn’t be here today collaborating together, or working on this grant project, if he had only offered answers (including the answer of “I can study you”) and didn’t ask questions.</p>
<p>I’ve come to better understand the disconnect that was going on in some of these conversations I had experienced (and to some degree, still experience today). This was the picture I drew:</p>
<p><img src="/assets/img/Patient_In_The_Cage_DanaMLewis.png" alt="the 'patient in the cage' drawing" /></p>
<p>As the word “subject” suggests, this made me feel, in healthcare and in scientific research, like patients are often treated as if we have been placed in a cage. My feeling is often that we, as patients and subjects, have zero power at any stage in the traditional research process; our experiences, perspectives, and insights - and even data, particularly if we are an “outlier” - may be outright ignored because we are merely “the subject.” It’s literally built into the words describing us. We must be patient while we wait for someone to help us; in essence, assuming our powerlessness. We are the subject of what is discussed, not a discussant and, thus, powerless. The problem is particularly frustrating because, if I have zero power, I also have no ability to course correct any potential problems with research. This happens from conceptualizing the “research study” all the way to the “peer review” process of publishing the outcome of studies.</p>
<p>I’m not the first to notice this; there is work being done to shift culture; but the most common approach to research <em>(as reflected in a microcosm on that call I experienced, or when Eric first asked if he could help by doing a study on me)</em>, intentionally or not, often de-legitimizes patient perspectives. When scientific research works this way, I feel like it also compromises the trustworthiness of the scientific consensus that forms, especially when there are no mechanisms to take in any input, feedback, or otherwise be impacted by patients. And while many patients share their experiences in social media; that feedback is not often tracked, collected, or collated to be then integrated back into the scientific endeavors. <em>(There’s more worth saying on this idea related to scientific consensus - see <a href="http://openingpathways.org/lived-experience-consensus">Eric’s post on lived experience & scientific consensus here</a>, and <a href="http://openingpathways.org/people-are-not-problems">Erik & Jessica’s examples of communities developing solutions</a>.)</em></p>
<p><strong>Again, we need to redesign and rethink healthcare and scientific research to involve equitable participation of ALL stakeholders who have relevant interests and perspectives</strong>. When patients are respected and included as equal participants throughout the entire research process, rather than just included as research subjects, research is better designed, performed, and aligned with the needs of the very population that the research is trying to serve. <em>(Also, it can save a lot of money - see <a href="http://bit.ly/2XeUVqh">this interesting study</a> about how patient involvement in research can return 500x the financial investment..as well as equivalent of accelerating a pre–phase 2 product launch by 2½ years (1½ years for pre–phase 3)!)</em></p>
<p>You can certainly poke holes in much of this. Patients aren’t always treated as subjects in interactions with researchers. Patients and researchers don’t always have conflicting priorities. But it happens enough and is still built into the very words used to describe humans in the process and, as with the examples discussed here, often without the person even realizing it. The systems of incentives and resources and infrastructure are in place so that this is more often the norm than not - even when everyone at every stage is operating with good intentions. (As probably everyone reading this post is!) And currently, beyond individual conversations attempting to change the way we do research, there is no known mechanism to fix and improve this.</p>
<p>Do I have all the answers? No. This is a large, complex problem. I don’t know how to solve it comprehensively, but I do know that speaking up about it as often as I can, <a href="http://openingpathways.org/patient-engagement-in-research">having our Opening Pathways team continue to think about and address it in our work</a>, and raising awareness and drawing other people into thinking about how we might improve the processes of scientific research and consensus building in healthcare is one of the things that I can do to help.</p>Dana LewisDana@OpeningPathways.orgWe need to redesign research to involve equitable participation of ALL stakeholders who have relevant interests and perspectives. That motivation is at the heart of our project and is why, as we began thinking about this grant work in the very early days, we began to reach out to talk to, share our ideas with, and learn from others who are working in the general areas we had identified. We had opportunities to talk to many researchers, clinicians, and doers in a lot of fields, all with various ideas and expertise. While most of the discussions we had were incredibly positive, supportive, and helpful in making sure we were not recreating the wheel, one of those conversations is still sticking in my mind. This conversation, like the others, was about sharing our ideas and plans, learning what this person was working on, and discussing any mutual areas of interest that came up in that discussion. However, this conversation went in a different direction than the others. First, Eric Hekler & I had a chance to talk about some of our planned work. Then, this person began explaining their work, and speaking about me and some of my previous work in the third person - while I was still actively on the call - to Eric. Their description of my work was incorrect. I felt awkward and unsure what to do in that situation, beyond trying to correct the factual inaccuracies. Being spoken about in third person left me feeling as if I couldn’t speak up during this interaction, which I otherwise would do. Afterward, I checked in with Eric to see if he had heard what I had heard - did I imagine the whole thing? - and to gauge if I was overreacting. Eric felt, equally, that something strange had occurred in the call. The more I reflected on this conversation, the more frustrated and awkward I felt about it. For our team, this interaction spurred on a lot of conversations both before we submitted the grant and afterward. It partially inspired us to recognize that what we wanted was to take a deeper look at the system (barrels, and the barrel makers), rather than individuals (apples), per our ‘apple or barrel’ perspective, as articulated in this blog post. It also got us to think about the diversity of perspectives, as well as the aspects of the team that existed prior to the project, which enabled us to work more effectively together, particularly with me as the PI. I needed to work through all of this before I felt ready to write about this. I wanted to make sure I had enough separation from this interaction so that I could think less about this particular conversation and, instead, aligned with the goals of my work & our team, more about the system that resulted in a particular person talking the way they did. Returning to the story, to help think through what about this situation was bothering me, and to be able to discuss it with Eric and the rest of the team, I started to draw. This actually became one of the first drawings I did, as a way to sort out my thoughts & impressions about the problem I was sensing. (And probably the first ‘sticky note science’ I started doing for this project - see here for an unrelated example.) I am by no means an artist and don’t really have any drawing skills, but it was a useful process to see what bubbled up. It helped me recognize that I felt disrespected and unheard when I was being spoken about in the third person while I was on the call. Upon further reflection, I realized that, in the conversation, it felt as though I was “the subject” that “the researchers” were “doing research” on and about. I felt like I wasn’t part of the conversation but, instead, a subject of conversation. This is a problem that is systemic, and larger than any individual. As another example, Eric reminded me that it also happened in the very first conversation Eric and I ever had about this potential work. When we first met, Eric’s offer was essentially that he could do a research study. The implication was that if Eric did the research on us, that research would, somehow, legitimize me, my work, the community’s work, and our collective perspectives. I would be a passive “research subject.” Thankfully, Eric had enough empathic regard to sense that his “offer” was not right and, instead, after hearing my response, pivoted to asking the question, “How can I help?”. We wouldn’t be here today collaborating together, or working on this grant project, if he had only offered answers (including the answer of “I can study you”) and didn’t ask questions. I’ve come to better understand the disconnect that was going on in some of these conversations I had experienced (and to some degree, still experience today). This was the picture I drew: As the word “subject” suggests, this made me feel, in healthcare and in scientific research, like patients are often treated as if we have been placed in a cage. My feeling is often that we, as patients and subjects, have zero power at any stage in the traditional research process; our experiences, perspectives, and insights - and even data, particularly if we are an “outlier” - may be outright ignored because we are merely “the subject.” It’s literally built into the words describing us. We must be patient while we wait for someone to help us; in essence, assuming our powerlessness. We are the subject of what is discussed, not a discussant and, thus, powerless. The problem is particularly frustrating because, if I have zero power, I also have no ability to course correct any potential problems with research. This happens from conceptualizing the “research study” all the way to the “peer review” process of publishing the outcome of studies. I’m not the first to notice this; there is work being done to shift culture; but the most common approach to research (as reflected in a microcosm on that call I experienced, or when Eric first asked if he could help by doing a study on me), intentionally or not, often de-legitimizes patient perspectives. When scientific research works this way, I feel like it also compromises the trustworthiness of the scientific consensus that forms, especially when there are no mechanisms to take in any input, feedback, or otherwise be impacted by patients. And while many patients share their experiences in social media; that feedback is not often tracked, collected, or collated to be then integrated back into the scientific endeavors. (There’s more worth saying on this idea related to scientific consensus - see Eric’s post on lived experience & scientific consensus here, and Erik & Jessica’s examples of communities developing solutions.) Again, we need to redesign and rethink healthcare and scientific research to involve equitable participation of ALL stakeholders who have relevant interests and perspectives. When patients are respected and included as equal participants throughout the entire research process, rather than just included as research subjects, research is better designed, performed, and aligned with the needs of the very population that the research is trying to serve. (Also, it can save a lot of money - see this interesting study about how patient involvement in research can return 500x the financial investment..as well as equivalent of accelerating a pre–phase 2 product launch by 2½ years (1½ years for pre–phase 3)!) You can certainly poke holes in much of this. Patients aren’t always treated as subjects in interactions with researchers. Patients and researchers don’t always have conflicting priorities. But it happens enough and is still built into the very words used to describe humans in the process and, as with the examples discussed here, often without the person even realizing it. The systems of incentives and resources and infrastructure are in place so that this is more often the norm than not - even when everyone at every stage is operating with good intentions. (As probably everyone reading this post is!) And currently, beyond individual conversations attempting to change the way we do research, there is no known mechanism to fix and improve this. Do I have all the answers? No. This is a large, complex problem. I don’t know how to solve it comprehensively, but I do know that speaking up about it as often as I can, having our Opening Pathways team continue to think about and address it in our work, and raising awareness and drawing other people into thinking about how we might improve the processes of scientific research and consensus building in healthcare is one of the things that I can do to help.People are not problems; yet often are essential for solutions2019-04-12T00:00:00+00:002019-04-12T00:00:00+00:00https://opening-pathways.github.io/website/people-are-not-problems<p>There’s good news and bad news for universities and our researchers. The bad news is that we are not the exclusive experts we thought we were in pretty much any field. While our research grants and centers show interest and dedication to knowledge production, they fall short in understanding the nuances and priorities of people experiencing the challenges we aim to address.</p>
<p>The good news is that there are communities with lived experience in the exact area we aim to study. They have insider, front-line knowledge on each dimension of the challenge and insight on how to address it. In short, lived experience complements diplomas in research every day of the week but it is even better to have both arrows in your quiver.</p>
<p>For universities to maximize their relevance and efficacy in community-based research, we posit three ideas:</p>
<ol>
<li>People are not a problem to be “fixed”</li>
<li>Challenges and research questions should be crafted with the affected communities, beginning with the earliest research question framing stages rather than a late stage research afterthought (we’re looking at you ‘<a href="http://chadorzel.com/principles/2010/06/17/the-problem-of-broader-impacts/">Broader Impacts</a>’)</li>
<li>When appropriate, universities provide resources and knowledge as a guide, not an authority</li>
</ol>
<p>In the spirit of this article on <a href="https://fellowsblog.ted.com/how-citizen-science-bridges-the-gap-between-science-and-society-d693af125ae4">citizen science and the architecture of participation</a>, we must reframe communities from “<em>passive problem generators only to be included when the solution has been created from the ivory tower and needs testing</em>” to viewing communities as <em>driven, curious people who have lived experienced and expert knowledge on a challenge and are eager to be part of the discovery process and take ownership of the solutions</em>.</p>
<p>Here are four times challenges were reframed. The result each time is that previously excluded expert communities became the solution:</p>
<ol>
<li><a href="https://www.vox.com/future-perfect/2019/3/26/18281325/ecuador-legalize-gangs">When Ecuador legalized gangs and the murder rates plummeted</a></li>
<li><a href="https://www.theguardian.com/news/2017/dec/05/portugals-radical-drugs-policy-is-working-why-hasnt-the-world-copied-it">Portugal decriminalizes all drugs and overdoses, HIV transmission, and drug related crimes all drop</a></li>
<li><a href="https://www.weforum.org/agenda/2018/02/how-finland-solved-homelessness/">When Finland closed their housing vulnerability loop through their ‘Housing First’ program</a></li>
<li><a href="https://blogs.lse.ac.uk/usappblog/2015/06/24/despite-scarce-resources-to-improve-relations-many-police-departments-have-deliberately-developed-welcoming-practices-towards-immigrants/">Despite scarce resources, to improve relations many police departments have deliberately developed welcoming practices towards immigrants.</a></li>
</ol>
<p>As Dr. Linda Williams notes in the fourth challenge above, “Welcomeness matters. It is the administrative means by which departments treat immigrants as members of the community deserving of protection and service and it may foster a dynamic whereby immigrants learn to trust and partner with the police to address issues of crime.” When we flip the problem inside out and avoid the temptation to “other” groups with different needs, we can find common ground in the solutions we design together.</p>
<p>People are not problems to be fixed. They are not class projects or problem statements for a research prompt. People are parts of real, diverse communities who care about the solutions that affect them and the way they are crafted. The community experts with actual lived experience have the knowledge, capacity, and ultimate motivation to organize and get to work. As academics, we can bolster this success and amplify their stories of discovery by contributing resources and guidance.</p>
<hr />
<p><em>This post was co-authored by Erik Johnston and <a href="https://isearch.asu.edu/profile/2168018">Jessica Givens</a></em></p>Erik JohnstonThere’s good news and bad news for universities and our researchers. The bad news is that we are not the exclusive experts we thought we were in pretty much any field. While our research grants and centers show interest and dedication to knowledge production, they fall short in understanding the nuances and priorities of people experiencing the challenges we aim to address. The good news is that there are communities with lived experience in the exact area we aim to study. They have insider, front-line knowledge on each dimension of the challenge and insight on how to address it. In short, lived experience complements diplomas in research every day of the week but it is even better to have both arrows in your quiver. For universities to maximize their relevance and efficacy in community-based research, we posit three ideas: People are not a problem to be “fixed” Challenges and research questions should be crafted with the affected communities, beginning with the earliest research question framing stages rather than a late stage research afterthought (we’re looking at you ‘Broader Impacts’) When appropriate, universities provide resources and knowledge as a guide, not an authority In the spirit of this article on citizen science and the architecture of participation, we must reframe communities from “passive problem generators only to be included when the solution has been created from the ivory tower and needs testing” to viewing communities as driven, curious people who have lived experienced and expert knowledge on a challenge and are eager to be part of the discovery process and take ownership of the solutions. Here are four times challenges were reframed. The result each time is that previously excluded expert communities became the solution: When Ecuador legalized gangs and the murder rates plummeted Portugal decriminalizes all drugs and overdoses, HIV transmission, and drug related crimes all drop When Finland closed their housing vulnerability loop through their ‘Housing First’ program Despite scarce resources, to improve relations many police departments have deliberately developed welcoming practices towards immigrants. As Dr. Linda Williams notes in the fourth challenge above, “Welcomeness matters. It is the administrative means by which departments treat immigrants as members of the community deserving of protection and service and it may foster a dynamic whereby immigrants learn to trust and partner with the police to address issues of crime.” When we flip the problem inside out and avoid the temptation to “other” groups with different needs, we can find common ground in the solutions we design together. People are not problems to be fixed. They are not class projects or problem statements for a research prompt. People are parts of real, diverse communities who care about the solutions that affect them and the way they are crafted. The community experts with actual lived experience have the knowledge, capacity, and ultimate motivation to organize and get to work. As academics, we can bolster this success and amplify their stories of discovery by contributing resources and guidance. This post was co-authored by Erik Johnston and Jessica GivensWriting Can Be Fun2019-03-27T00:00:00+00:002019-03-27T00:00:00+00:00https://opening-pathways.github.io/website/Writing-Can-Be-Fun<p>Earlier this month, I helped prepare a 5,500 word grant application with 68 scholarly references across multiple fields, a one page summary, a data management plan, and a budget to the National Science Foundation (NSF). This was the small version of a potential future grant application, which would be 50% longer, and include additional postdoctoral mentoring and management and coordination plans. These grant proposals must conform to a program solicitation of over 10,000 words, which spells out how this particular solicitation differs from the baseline <em>Proposal & Award & Policies & Procedures Guide</em>, itself a 192-page PDF. This grant application was coordinated across three academic institutions, five administrators, and seven intellectual collaborators.</p>
<p>After that experience, I picked up efforts (not as first author) to publish a nearly 16,000 word journal article, with over 100 scholarly references, for which my collaboration with the first author began ~3.5 years ago. After the article was finished and submitted over a year ago, it has gone through two reviews by an editor and three external reviewers. In response to the reviewer comments, our team of authors produced two response letters of 12,500 and 7,000 words, respectively. We’ll see whether this most recent round of revisions is sufficient for the article to be published.</p>
<p>My first blog post for this Opening Pathways project was 379 words.</p>
<p>It turns out writing can be fun.</p>
<p>A significant portion of my work is writing, and while I imagine some academics find authoring journal articles and grant proposals fun, I would place those activities squarely in the work, not fun, category. I have authored or co-authored academic journal articles, grant proposals, ballot initiatives, technical reports, whitepapers, conference presentations, scripts for video courses, grading comments, marketing copy, content for PDFs, and somewhere along the way, had forgotten that writing can be fun.</p>
<p>Then, of course, I land in this Opening Pathways work, collaborating with an experienced digital communicator (hi Dana), who invites all of us on the team to write blog posts. And I do. And it is fun. I get to start sentences with “and” if I feel like it, and hyperlink to wikipedia or the popular press, and express myself without meticulous attention to linking every statement to evidentiary support from content that already exists. I can write about <a href="http://openingpathways.org/cultural-consciousness">culture</a> (<a href="http://openingpathways.org/pre-existing-culture">twice even!</a>), <a href="http://openingpathways.org/patient-engagement-in-research">other people’s blog posts</a>, and <a href="http://openingpathways.org/subjectivity-objectivity">how we say hello in the academy</a>.</p>
<p>There is a freedom in short form writing; I can make a point and leave it at that, without needing to hit a word count or fill a page. It’s also a relief to articulate an idea, and put it out on the internet, without having to review a body of scientific literature first (which is customary for academic journal articles). This blog has been a refreshing exercise for me, reminding me that writing can be fun, and helping me consider and develop my voice online. It’s been lightweight, rewarding, and an opportunity I have really appreciated as part of this work.</p>
<p>For academic writing, I have sometimes (often) found myself feeling alone, and/or stuck. Even with co-authors, asynchronous communication has left me mostly to my own devices. I am realizing that part of my writer’s block in these situations could be stylistic, that I am in drafting in a very academic referenced style, and could be losing track of the big ideas, or major plot points within them. I think that this blog has invited me to write differently in those situations when I encounter them in the future. Rather than feel bound to what exists (the literature) and what is defensible (scientifically rigorous ideas), putting on this blogging hat might help me think more freely, and play with ideas, until I find that sweet spot where I can articulate them for my intended audience.</p>
<p>All of this to say, this blog has improved my writing style and practice, and I hope to build more creative expression into my writing going forward. Thus far, I have drafted more microblogs (tweets), rather than just retweeting things, and I want to follow this instinct, maybe seeking out popular press, personal journal, or other writing opportunities that can help my writing for work feel a bit more like writing for fun.</p>John HarlowEarlier this month, I helped prepare a 5,500 word grant application with 68 scholarly references across multiple fields, a one page summary, a data management plan, and a budget to the National Science Foundation (NSF). This was the small version of a potential future grant application, which would be 50% longer, and include additional postdoctoral mentoring and management and coordination plans. These grant proposals must conform to a program solicitation of over 10,000 words, which spells out how this particular solicitation differs from the baseline Proposal & Award & Policies & Procedures Guide, itself a 192-page PDF. This grant application was coordinated across three academic institutions, five administrators, and seven intellectual collaborators. After that experience, I picked up efforts (not as first author) to publish a nearly 16,000 word journal article, with over 100 scholarly references, for which my collaboration with the first author began ~3.5 years ago. After the article was finished and submitted over a year ago, it has gone through two reviews by an editor and three external reviewers. In response to the reviewer comments, our team of authors produced two response letters of 12,500 and 7,000 words, respectively. We’ll see whether this most recent round of revisions is sufficient for the article to be published. My first blog post for this Opening Pathways project was 379 words. It turns out writing can be fun. A significant portion of my work is writing, and while I imagine some academics find authoring journal articles and grant proposals fun, I would place those activities squarely in the work, not fun, category. I have authored or co-authored academic journal articles, grant proposals, ballot initiatives, technical reports, whitepapers, conference presentations, scripts for video courses, grading comments, marketing copy, content for PDFs, and somewhere along the way, had forgotten that writing can be fun. Then, of course, I land in this Opening Pathways work, collaborating with an experienced digital communicator (hi Dana), who invites all of us on the team to write blog posts. And I do. And it is fun. I get to start sentences with “and” if I feel like it, and hyperlink to wikipedia or the popular press, and express myself without meticulous attention to linking every statement to evidentiary support from content that already exists. I can write about culture (twice even!), other people’s blog posts, and how we say hello in the academy. There is a freedom in short form writing; I can make a point and leave it at that, without needing to hit a word count or fill a page. It’s also a relief to articulate an idea, and put it out on the internet, without having to review a body of scientific literature first (which is customary for academic journal articles). This blog has been a refreshing exercise for me, reminding me that writing can be fun, and helping me consider and develop my voice online. It’s been lightweight, rewarding, and an opportunity I have really appreciated as part of this work. For academic writing, I have sometimes (often) found myself feeling alone, and/or stuck. Even with co-authors, asynchronous communication has left me mostly to my own devices. I am realizing that part of my writer’s block in these situations could be stylistic, that I am in drafting in a very academic referenced style, and could be losing track of the big ideas, or major plot points within them. I think that this blog has invited me to write differently in those situations when I encounter them in the future. Rather than feel bound to what exists (the literature) and what is defensible (scientifically rigorous ideas), putting on this blogging hat might help me think more freely, and play with ideas, until I find that sweet spot where I can articulate them for my intended audience. All of this to say, this blog has improved my writing style and practice, and I hope to build more creative expression into my writing going forward. Thus far, I have drafted more microblogs (tweets), rather than just retweeting things, and I want to follow this instinct, maybe seeking out popular press, personal journal, or other writing opportunities that can help my writing for work feel a bit more like writing for fun.