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I wrote about Patient-Centered research in a previous post: Just-In Time Decisions. A different version of that post appeared in the Society of Participatory Medicine’s blog. Susan Woods responded to that post with the research funding system doesn’t really work for anyone. It is in concrete, Agreed. It always helps to follow the money.
I am a member of a Boston-based contingent of ambassadors to PCORI (Patient Centered Outcomes Research Initiative). We made three recommendations to the PCORI Board in November. This is a summary of the second recommendation.
Patient-driven, patient-centric research opportunities are less likely to be prepared to submit fundable proposals to PCORI than traditional research teams.
Many professionals and patients don’t yet appreciate the innovation that patient-professional partnerships bring. We’re all patients is a common refrain from professionals when entering into collaboration with patients for the first time. That may be true, yet if that were enough, our health care system would have achieved a level of patient-centeredness that would render initiatives like PCORI unnecessary. Including people who are able work collaboratively while still retaining the unique vantage point of their own stakeholder group is critical to producing ideas innovative enough to handle the challenges our health care system is facing.
We found that
PCORI’s current structure of supplying large grants to a small number of projects favors established research teams and paradigms.
Alternative, nacient teams are less likely to receive highest scores in grant proposal requests.
Research projects addressing partnership innovation, cultural change, social and behavioral determinants, or dissemination are likely not to be funded.
Therefore we recommended that PCORI:
Allocate a defined proportion of funding for a larger number of smaller projects in the form of micro-grants that either prepare a submitting team for a high scoring large grant or addresses research into partnership innovation, cultural change, social and behavioral determinants, or dissemination.
Apparently, PCORI is considering this recommendation. I’m looking forward to following their next steps.