Patient Involvement in Research: Innovative, Patient-Powered, Welcoming
I’m a patient helping to change the culture of research and I am excited! It feels great to be empowered, encouraged, and a part of something larger than myself. I get to be a part of things I could only imagine someone else doing and do things I never really thought I could achieve. How did all this happen? I became part of a Patient-Powered Research Network (PPRN) that has a national and international membership. It is the brainchild of the Accelerated Cure Project for multiple sclerosis (MS) and is called, appropriately, iConquerMS™.I was asked if I would help out on a committee for a larger network, PCORnet, the National Patient-Centered Clinical Research Network, which is made up of 20 PPRNs and 13 CDRNs(Clinical Data Research Networks). This initiative of the Patient-Centered Outcomes Research Institute (PCORI) is designed to conduct health research faster, more efficiently, and at lower cost than ever before, and to do it with patients and other stakeholders as collaborators.