Annual report

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(Tl;dr - here’s a copy of our annual report for RWJF from Opening Pathways, with a few extra notes at the bottom.)

Most grants have reporting periods & various paperwork they want you to fill out over the course of your grant. RWJF asks for an annual report, and a grant-end report. As we passed the first year mark of our 18 month grant (slated to end March 2019), we put together our annual report. Given that we have been blogging and documenting our work in quite a bit of detail over the past year, it was easy to write up our work in response to the questions in the report. The hardest part was keeping it to the required page limits!

In full transparency, as per the aims of our project, I’ve included our annual report below. At the bottom, I’ve also added a few more details that we didn’t have room for in the report, and some updates.

1. What did you accomplish during this reporting period?

Our project has three core components: 1) Beta-testing the process and methods of an academic-based on-call data science team to support research on data-driven questions from the patient community; 2) Developing and hosting a meeting to bring together diverse stakeholders to discuss challenges, barriers, and opportunities related to patient-driven innovation and research; 3) Developing a toolkit to support patient researchers and innovators for future work, based on the learnings of the first two items. During this reporting (year 1), we heavily focused on #1 and #2, along with other foundational activities for the grant.

Foundational activities included:

  • Development of a 100% open source website to describe the project; host a blog for important conversations as an output from our grant work (22 total so far); and enable submissions for community members to reach out about working with the data science team.
  • Consulting with a legal consultant (Ann Waldo, subcontractor to the grant) around our project and website’s terms and conditions and privacy policy for the projects.

#1 progress and activities:

  • We initiated the data science team, and began soliciting input/participation from the online diabetes community. We received 8 submissions to participate with the data science team. After following up: 3 had specific data science questions that the team began working with; 2 had interest in working with the team but did not arrive at or evolve a specific question to work with the team on; 2 failed to respond to follow-up emails after filling out the form; and 1 was a PhD student who is interested in the same space, but does not have a data science question for the team.
  • We initiated 3 projects as a result.
    • The first has been completed and was presented at the American Diabetes Association’s Scientific Sessions in June 2018, focusing on insulin sensitivity changes that can be observed in the data of individuals with type 1 diabetes. The other two are still in progress:
    • The second is in active development, working on tools to assess insulin dosage and correlation with patterns related to menstrual cycles;
    • The third is waiting response from the community partner about next steps, and is related to a research question about vitamin D supplementation and blood glucose variability changes.
  • In addition to the actual projects, the methods of this team were evaluated by the team. We identified that this style of on-call data science team can tackle such data science projects; however, for future applications/scalability, this is likely not the most efficient method of providing data science support to patient communities.

#2 progress and activities (completed):

  • We hosted a “convening” in May 2018 in Washington, D.C. for over a dozen traditional and non-traditional researchers, innovators, and advocates. This meeting was carefully designed to provide more equitable participation than most traditional scientific or medical or healthcare-related meetings.
  • We worked toward equitable participation by a) ensuring invitations went to diverse participants; b) starting the day with a role-switching activity where traditional and non-traditional participants were (at first) unknowingly provided a ‘economy’ and ‘first class’ experience for entering the meeting; and c) organizing our research team’s roles to ensure that all participant voices would be heard without influence from our biases or strong perspectives on discussion topics.
  • This meeting was extremely successful: our team felt like we achieved equitable participation where all voices were heard and able to participate in the discussion, and we received feedback from participants that in two cases, it was the best-designed and -organized meeting that they had ever participated in. Additionally, we have seen the ripple effect of our conscious meeting design influencing future work, including one of the co-PI’s continued reflection about the importance of bearing witness, and the impact of power dynamics on work in healthcare.

2. Do you have any stories that capture the impact of this project?

There are two elements that articulate the impact of this project. One is the influence it has had on our co-PI, Eric Hekler. His two pivotal blog posts, “bearing witness” and “honoring agency”, are included as an appendix.

The second is an indirect, but related impact of this project. One of our goals inside this grant was to document the meta-processes and decisions related to this grant, particularly because it is the first patient-funded grant that we know of by RWJF. Related to the success of this grant, we have heard that another patient researcher will likely be funded by RWJF. This is a breakthrough of funding directly toward research that needs to be - and thanks to RWJF, is being - prioritized directly by patients, and is a huge step forward. This patient researcher has also given us positive feedback about the meta-documentation and blog posts about this grant’s work and it’s assistance in paving the way for their work to take place.

3. What, if any, proposed activities were not completed and why, and what are your plans for completing them?

The implementation of the grant, including paperwork and establishing relationships between the PI and the financial organization (ASU) took more time & distracted from implementing the grant work as quickly as expected. Therefore, the third item of focus (the toolkit), is just being initiated rather than being drafted at this point in time. This work is commencing currently.

4. Did RWJF assist or hinder you in any way during this period?

Our grant officer, Paul Tarini, has been an incredible resource during our work. He was helpful and clear about expectations during the grant application process as well as throughout the grant. Our monthly grant calls have been impactful in helping us assess progress, evaluate pivots/opportunities to take advantage of, and in finding linkages to other individuals and bodies of relevant work.

The old grantee resources (publicly accessible via are hard to follow - however, the new templates and instructions (such as the template you can download for annual reporting) on the grantee resource hub are very helpful - I found those after commencing our annual reporting process.

5. For this project, has your organization received funding from other foundations, corporations, or government bodies?

Neither I (Dana Lewis, the PI) or the direct ASU team has received other funding for this work. However, an interested postdoctoral researcher, Dr. Anarina Murillo, received a $5,000 stipend from the Sloan Scholars Mentoring Network of the Social Science Research Council and Alfred P. Sloan Foundation to contribute to our work during summer 2018. Her ability to participate in this research and add unique, independently analysis above and beyond the original grant probably increased the competitiveness of her application.

6. Is there anything else you want to tell RWJF?

This grant is unique because a patient, or a non-PhD/non-traditional researcher, is the PI and leading the work, and has established a relationship as a subcontractor with an academic organization (ASU) to carry out the work. This is one successful method for initiating a patient-funded project. However, I would encourage RWJF to consider and explore alternative methods for providing funding and/or resources for patient-funded work. While different organizational relationships might be explored (such as an institution hiring a patient as a faculty appointment, selecting a fiscal hub to be the financial grantee, etc.), RWJF should also consider providing resources similar to that of brand-new PI’s, because patient-PI’s may still not have access to the traditional built-up support mechanisms of institutions, and may benefit from resources such as an assistant or project manager familiar with grant processes who can help navigate the bureaucratic/paperwork requirements of doing the grant work.

7. What were the main products of the reporting period? Our main product has been our website and blog: It has been submitted as a product. We also created a poster for the American Diabetes Association Scientific Sessions conference in June 2018, which was also submitted as a product.

Notes from me to supplement the report in this blog post:

  1. More details in this post about lessons learned from the data science processes; and more in this blog post about the design of the Convening
  2. At the time I wrote our annual report, their grant wasn’t publicly going, but it is now! Andrea Downing & Jill Holdren are also now grantees from RWJF, looking into developing new models of data governance related to the privacy of patients sharing and connecting online.
  3. OMG, the paperwork. As I previously noted in this lessons learned post about paperwork, it’s quite the headache, and has unfortunately continued to take up more time than I think it should over the lifetime of this grant. In addition to the growing pains of getting the grant going, it has also taken me months to get the appropriate year-end financial report from ASU that RWJF also requires. I don’t have access to the ASU systems, and I got quite a bit of run around and “who’s on first”-ness in trying to get this report generated & submitted to RWJF. This has also been slowing down my ability to evaluate the remaining budget for our project to re-allocate or adjust funding for the remaining body of work.
  4. Paul is fantastic. One thing I wish I had better understood at the start of the grant was the type of relationship a PI has with the grant officer, and the unstated elements of how that relationship works - like what feedback to expect (or none at all, unless I ask for it specifically). One of the things I’m going to miss the most when our grant is over is the monthly calls with Paul.
  5. One of Erik Johnston’s previous mentees, Anarina, had reached out and expressed interest in working with our project. This was unexpected, but awesome to add some new perspective to our data science work. It was nice that she had external funding to be able to do so; and also because it enabled me to test some of what I had developed for onboarding the initial data science team, and cut down (a little bit) on the learning curve for working with some of the rich type 1 diabetes-related data we have access to for this work.
  6. I’ll cover this more in the future; but while I am glad we experimented with the model of a patient-PI and co-PI’s at an academic institution, I think it is worth exploring other models that enable patient PI’s to receive and direct grant funding. I plan to pursue and further brainstorm some recommendations. I am hoping RWJF will be willing to consider these alternative models, too.
  7. We submitted all our ‘products’, which is basically this website; the blog posts; and the poster from the data science work. Nothing new there.

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