pnschmidt said

"We're piloting the project right now. The phase-I protocol was developed before I joined the foundation, and it did not include patient involvement in the study design. Still, much of the data is patient-reported, and so no one can succeed without engaging the patients (and caregivers) as stakeholders. Going forward, I have experience with projects at Kaiser Permanente where we launched several disease management protocols where patient input was integrated throughout the process, and I hope to bring that model to this project. Also, I've been involved in the Health 2.0 conferences and the participatory medicine group (led by e-Patient Dave) and am leveraging that experience in thinking about study designs. Perhaps we can accelerate this by including participatory medicine in our next research funding opportunity."

Most excellent and very exciting! Your previous involvement with Health 2.0 and e-patients.net is good news for patients; I'm inclined to think you "get it" - a great asset for NPF and this project - I hope you will continue the conversation with us.