As we embark along new pathways for discovery in health and healthcare, we are glad to encounter fellow travelers. One new voice to my ears is Jennifer Johannesen, who expertly describes a naked emperor behind the rhetoric of patient engagement in research. Much like my experience with urban planning (see Arnstein and Shipley & Utz for more), engagement often amounts to theater. There is performance art and warm fuzzy feelings, but rigor, replicability, representativeness, and influence are conspicuously absent. To take Jennifer at her word, I will use this post to assess our grant work in the context of her list of “Ways Forward for Researchers.”
Professionalize/train patients: Our grant builds on personal relationships among the PIs, and our lead PI has a prominent patient voice. However, to include patients beyond our personal networks, one product of our work in Opening Pathways will be resources to support DIY efforts for patient communities beyond the type 1 diabetes (T1D) community.
Get clear on patient representation: Our PI, and the people with T1D with whom we work, are not representative of people with T1D, in general. Our collaborators differ from most people with T1D because they are active in, or at least aware of, the relatively small OpenAPS community driving DIY T1D research forward. This is because our work offers academic research support to answer the questions of that specific community, and learn from the successes of that community to share and discover pathways for health innovation with other patient communities.
Be accountable: Our team is led by a PI with diabetes, who always considers our work from a patient’s perspective. This has manifested in honoraria for patient participants at our events, attempts to pay for participation up front (rather than reimburse), and consistent reflection (see “Cultural Consciousness” and “Apples, Barrels, or Barrel Makers?”) on the norms and practices of our institutional (academic and funding) partners. We also plan for user-centered design to be the main methodology through which we produce our patient-facing training materials, prioritizing the needs of patients as they understand them.
Push for standards and protocols: We are still early in our efforts, but have begun, and plan to continue, conversations with Robert Wood Johnson Foundation about their broader expectations for patient engagement, and how this grant might inform the evolution of their practices.
Contribute to the literature on patient engagement in research: We will publish on the process through which we produce materials to support the efforts of patient communities beyond T1D.
This grant doesn’t exactly conform to the suggested ways forward, but I am heartened by the degree to which it does so far, and our team plans to return to Johannesen’s post as we continue to develop the work. Further, as all of our grant’s work is open source, we invite contributions, suggestions, and other input and feedback from anyone working or interested in this space.
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