Precision Medicine Must Be Participatory Medicine

By Donna Cryer

I am honored today to be involved in two healthcare initiatives that are at the same time foundational and cutting edge.

As a patient, particularly one active in the digital space, there is no greater role model and sherpa than Dave DeBronkart, better known around the world as epatient Dave. Recently I was asked to take on the role of co-chair of the Society for Participatory Medicine, a role founded by Dave. I certainly will dedicate my whole heart and best efforts to represent and advance the principles of participatory medicine in healthcare to create a system that works better for both patients and the clinicians we partner with to live our fullest lives. Dave’s gracious and generous announcement can be found here.

That brings me to today’s White House event with President Barack Obama and NIH Director Francis Collins on the next stage of the President’s Precision Medicine Initiative. Representing patients in my new role as Chair of the Society of Participatory Medicine, as a Board member of the Personalized Medicine Coalition, and as president and CEO of the Global Liver Institute, my singular message is that patients are not just participants in research or the necessary transformation of our healthcare infrastructure and systems, but essential partners. Dr. Collins statement and livestream of the White House summit can be found below:

Later today, NIH Director Francis Collins will join President Obama at a special White House event to recognize the efforts of federal agencies, companies, and non-profit groups to advance precision medicine. You are invited to watch the event live beginning at 10 am ET:
https://www.whitehouse.gov/live/white-house-precision-medicine-initiative-summit
NIH is driving major components of the President’s Precision Medicine Initiative (PMI), including the PMI Cohort Program, a landmark longitudinal research study of one million or more U.S. volunteers. To coincide with today’s White House summit, Dr. Collins has issued a statement on new developments in preparation for launching the cohort in 2016. To achieve our goal of enrolling 79,000 cohort participants by the end of 2016, we have taken several innovative actions this month, including announcing initial funding awards. We hope you’ll take a moment to read the statement.
Best Wishes, The NIH PMI team