I have been lucky to somehow accomplish a number of milestones in my lifetime: graduate college, enter medical school, build a company, spearhead a premiere medical technology conference, pen a blog with over 10,000 followers and, now, in what seems like the largest stroke of luck, receive an invitation from The White House, under the direction of President Barack Obama’s Office of Science and Technology Policy (OSTP), to assist in the newly launched Precision Medicine Initiative.
Just recently, I traveled to Washington, D.C. to attend The White House OSTP and Stanford Medicine X joint workshop on “Engaging Patients as Partners in Research.” When I first received the invitation a month prior, embellished with the official logo of White House, I had to do a double-take and then verify the legitimacy of the sender. Indeed, everything checked out and I had been officially invited. Mom was the first to know.
After I received my official appointment badge, passed through security and entered the White House campus, a chill ran through me. I was entering arguably the most powerful building in the world, in which decisions are made that have effects and ripples everywhere. The gravity of my involvement was not lost on me. Determined to represent myself and OHSU’s innovative ethos well, I strode past doors that read “National Security Council” and “Office of the Vice President” with a resolve I hoped didn’t betray how giddy I was inside. Once all 50 or so guests assembled inside our conference room, the workshop kicked off.
“Look around you,” DJ Patil, Chief Data Scientist of the United States Office of Science and Technology Policy, encouraged, “We are in a room that has been used to negotiate international treaties…and now there are sticky notes on the wall!” Everyone burst out laughing and applauded. In this room, Stanford Medicine X and the White House had convened some of the most powerful and influential names in medicine, technology, patient advocacy and politics to solve one problem – engaging patients more broadly and rigorously in the research process.
And the twist? No one knew who anybody else was. In clever fashion, the guest list was kept secret, the agenda was sealed and everyone’s name tags had no mention of their titles. Why? To generate a more equal playing field, where all participants were valued, irrespective of their title. Hierarchy was nonexistent, and everyone came from a place of naivety – the birth place of creativity. A blank sheet with all the potential.
For the next six hours, we used design principles to hash out our ideas, moving from room to room among the White House offices. At the end of the half-day, we had generated six different ideas that could propel patient engagement forward in the world of research. Workshop participants enrolled in the ideas they thought could contribute to.
At that moment, I figured the workshop had completed, but participants in the workshop began to introduce themselves, their titles, their expertise and then generously offered their time to aid everyone else in the room. As it turned out, I was sitting down next to CEOs, CTOs, VPs, Editors-in-Chiefs of prominent medical journals, founders, advocates and other incredibly accomplished and influential individuals. I chuckled as I remembered that, unlike my fellow participants, I had a pediatrics shelf exam to make up the following week. Medical school stops for no one.
I think the biggest takeaway I have from this experience is witnessing the passion patients have for contributing to science and contributing more than just their time as subjects, but acting as partners in everything from hypothesis generation, to methodology creation, data gathering, analysis, dissemination and recognition. Even more basically, patients wish to know whether or not their participation, at whatever engagement level, had any sort of contribution to the world of science. In essence, patients want to have a more meaningful impact on medical issues.
Ultimately, the concept of patients as partners in research is a larger reflection of what we medical students strive to uphold – the sanctity of the patient-physician relationship. The discussions in the White House echoed, sometimes verbatim, the tenets we were taught in first and second year of medical school during our Principles of Clinical Medicine course – partner with your patients, understand their backgrounds and help them achieve their goals from the health care system. The mix of medical professionals – from M.D.s, NPs, to Pharm.Ds and more – in attendance reflected OHSU’s own efforts in fostering interprofessional collaborations at every level of education and decision making.
After seven hours of collaboration, we disbanded. Business cards were exchanged. Keep-in-touches and goodbyes wished. A transformation happened at this workshop – we formed a tribe of progressives indelibly tethered by our collective link to the White House and to the spirit of Medicine X.
And the cherry on top? I ended the night bowling on the President’s own bowling alley. Yes, I did get a strike. Miracles do happen.