I have been away from the blog site for almost three weeks now. It has been nice to receive a few e-mails, messages, and calls asking if I’m doing ok because I haven’t been heard from in a while. I’m doing well. The Parkinson’s symptoms are being held in check as best as can be expected. Prior commitments to the Patient Centered Outcomes Research Institute have kept me quite busy with another round of research grant application reviews. I was fortunate to have been chosen to take part in the Pilot Project Grants Review process earlier this year where, as grant application reviewers, we received training in the NIH Peer-Review Process. Having had little or no prior non-medical background reviewers as part of the NIH system, they kept sending mail and e-mails addressed to “Dr. Robledo”. As nice as that sounds I had to let them know that I was Mr. Robledo, patient advocate and part of the patient reviewers team that was using their system. The latest round of reviews, which as previously mentioned has kept me busy reading applications, studying applications, finding the strengths and the weaknesses of the proposed studies, and providing input from the patient perspective as to whether the application is worthy of being awarded research grants based partly on my scores. That probably explains the reason I have been totally focused on the process. As an advocate whom has been at this a few years, given the chance to participate fully in the research grant review process is something that I don’t take lightly. I’ve commented to the people at PCORI that in order to make effective use of patient representation on the review groups, equal participation is required from the very beginning, and equal quality commitment from the patient. We have come too far, fought too hard, and laid our reputations on the line not to take full advantage of what is truly a paradigm shift in the research process. As PCORI is not disease-specific in its role as an organization that funds research, I’ll follow-up with a post about their mission and how others can get involved.
In the meantime, after having submitted my initial critiques, I’m on to reviewing the rest of the applications. Although the rest of the applications were not assigned to me for rating, part of the process entails being informed about the applicants, their work, their plans, and having confidence enough to provide input about their applications at the review meeting in a few days.