The White House Office of Science Technology and Policy and Stanford Medicine X co-created a special event to “…focus on engaging participants as partners in research, a core principle of the President’s Precision Medicine Initiative.” The event was hosted at the White House and captured the spirit of Everyone Included as it was comprised of a diverse group of patients, researchers, clinicians, designers, and technologists, as well as experts in law, policy, and citizen science. As can be imagined, it was quite a humbling experience to be invited to go to the White House and take part in this august gathering.
Reflecting the co-creation of the event, it was opened in concert by OSTP’s @ClaudiaWilliams (above) and Med X’s @LarryChu (below) followed by addresses by White House OSTP leadership including Chief Data Scientist DJ Patil, Precision Medicine Initiative Project Manager Stephanie Devaney, and later US Chief Technology Officer Megan Smith.
Johns Hopkins – Sibley Innovation Hub’s @NickDawson (below) set the tone by brandishing post it notes. He encouraged everyone to use these sticky notes as the tools of a designer and the Stanford Medicine X’s Brainstorming Tips throughout the Workshop to develop questions and aims tied to partnering with participants for research with an eye towards the Precision Medicine Initiative (PMI).
My impression was that the use of the broader term “participants” rather than the narrower category of “patients” was a PMI-influenced reflection of the roles to be played in research by people who self-identify as “in good health” or “well” or those who are focused on maintaining health rather than managing an acute or chronic health challenge.
Claudia Williams also announced that during the event the
Robert’s Rules of Order Chatham House Rule would be in effect.