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My Parkinson's Journey

In which Terri shares a humorous look at her journey with Parkinson's disease and Dystonia:

For me, illness and health are not opposites but exist together. Everyone has something that is challenging to them. Mine just simply has a recognizable name. My life will take a different path because of this but that's okay. Everyone has changes in their lives that create their path.  I'm learning how to enjoy whatever path I'm on.

The Patient's Voice - A PCORI Experience

Terri Reinhart

I wish I could say I did this for purely noble purposes, but I have to admit, part of the draw was being able to travel to Washington D.C. for the in person panel reviews. Now that I'm home, I'm still very glad I went, but for different reasons. To attend and be the voice, the advocate of patients in the decision making process for funding clinical studies is an amazing and humbling experience. 

I found out about PCORI from my niece, Anne Schuster, who received her Master's degree in Health Economics at Johns Hopkins University. She knew I had been on patient panels at the University of Colorado Medical School and School of Pharmacy and she knew I valued the chance to speak on behalf of patients. She suggested I apply.

I was assigned 4 applications to review under 3 different criteria. I did not have to grade the appications on technical merit. There were plenty of scientists to do that bit. The criteria we looked at as patients were: whether the study identified a critical gap in knowledge, whether the study was patient centered, and whether there was adequate patient/stakeholder engagement in every stage of the study proposal.

If it was a challenge for me to read and determine the strengths and weaknesses in each of these areas, I know it was even more of a challenge to write up the proposals. PCORI is unique in insisting upon patient and stakeholder engagement and many scientists are struggling to figure out just what this means. So far, I'm truly impressed with the work the organizations have done in this area. For our part as reviewers, it was helpful to have a mentor to guide us and answer our questions. My mentor, Kayte, was very patient.

After writing up my critiques of each application and submitting them, it was soon time to go to Washington DC for the in person panel review. We started early on Thursday with breakfast and a short training. Then we were welcomed by Dr. Joe Selby, the Executive Director of PCORI, and others. Then came the actual panel reviews. We presented and discussed each application before giving them our individual scores. Everyone had a chance to speak and everyone's voice was respected equally. The discussions were quite lively. 

Dinner was lively the first night, too, as Kayte and company cheerfully welcomed me to sit at their table. I found out what PCORI mentors and staff do when they're not working. Before long, someone mentioned the new tequila diet, which certainly must be a great idea for another study proposal. The conversation went round and round and I laughed till I hurt. At some point, the originator of the tequila idea looked at us seriously, "But no salt and no lemon. This is a clinical study." And we all collapsed laughing again.

After dinner, I went for a walk with a very nice young doctor. Most of the doctors seem young and I felt a bit like a grandma. Oh, right. I am a grandma. We walked around a few blocks and then back to the hotel, where a nice staff person saw me and came over to give me directions to my room... again. Time to rest up for another day of reviews.

If invited, I would do it again. I believe in what they are trying to do.

Interested? There are many ways to get involved. Start here! Let me know. Maybe one day we'll be on a panel together.