What it means to be a "patient stakeholder"

Greetings from Baltimore, Maryland! I just finished a full day of reviewing grants as a patient stakeholder for the Patient Centered Outcomes Research Institute--aka PCORI. PCORI funds biomedical research, much like the National Institutes of Health, but as its name implies, the research it funds is uniquely "patient centered." What does that mean? Proposals are critiqued not just on their scientific merit but also on their involvement of patients in the research process and their likelihood of solving problems patients identify as most important. Each grant submitted to PCORI is reviewed by both scientists and at least one patient, which is why I had the opportunity to participate in a scientific review process that is typically limited to MDs and PhDs.

The whole process has been fascinating to me. I do have quite extensive experience working with scientists and reading grant proposals--when I'm not blogging, I manage the Research Funding & Development Services program at Oregon Health & Science University. That said, I'm not a scientist. I may help scientists find grants to apply for and advise on writing, but I've never had the opportunity to review a grant for a public or private entity before. In summary, the experience was incredibly rewarding and informative. I encourage anyone who is interested to apply to be a patient or stakeholder reviewer. It's a pretty hefty time commitment, but I know a few fellow health advocates who I think would make tremendous contributions as a reviewer. Feel free to email me if you're considering applying--I'd be happy to answer any questions you have.