Last week was an adventure in our nation’s capitol. I had the pleasure of helping plan and co-facilitate a joint Medicine X and White House event called ‘Engaging Participants as Partners in Research.’ The purpose was to pull together diverse stakeholders in the research ecosystem to identify the most pressing problems and promising opportunities, and brainstorm and prototype solutions.
The night before the event, we had a dinner to celebrate the birthday of Dr. Larry Chu, the Executive Director of Medicine X. Here is a hilarious photo of a few people waiting to jump out and surprise him:
The next day, we all gathered in the EEOB and kicked off the meeting. What a room. If you look closely in the back you can see the white house logo in the little doorway.
It made me so happy to see all these people, the ones who really ‘get it.’ That is one of the energy boosts of being at these events. You know you are on the same page with these people, and over time we’ve become friends, and not only on social media. Medx – it really is a family.
But what was wonderful about this research meeting was that it included lots of newbies, people who may not have been as accustomed to participating in meetings alongside patients, on their feet, in a room strewn with chairs and sticky notes and markers. As one high-profile speaker said:
“Look at this room. This is a room where treaties are negotiated, and now it’s covered in sticky notes. This is the way it should be.”
I got to rub elbows, literally, with DJ Patil, Chief Data Scientist of the USA, and we got to hear from both him and the CTO, Megan Smith. I had a sense of awe at these people who are so articulate and mission-driven, and who navigate this beastly hot and sweaty city all summer long, in suits no less, to get as much done as they can before the end of their term. There was definitely a sense of urgency, as this presidency is nearing its close.
The whole day was a bit chaotic, and we were trying to accomplish a lot in a short time, but I think everyone got a lot out of it. At the end of the day Claudia led a powerful group exercise with the whole room, in which she asked people to state what they ‘need’ or could ‘offer.’ One woman offered her skill at interpreting HIPAA laws. Patients offered their expertise and perspective. Researchers called out for participants. It was an emotional way to cap the day.
A few of my takeaways:
- A small thing researchers can do is send a thank you note to the participants, after the study. That was an ‘aha’ moment in one of the presentations.
- Even better, make sure participants know what the results of the study were. Close the loop with them.
- Find ways to pull patients into the research planning process, so that we’re studying things that people actually care about, and setting up our protocols in the most patient-oriented ways possible.
Overall I was honored to take part; I was happy to see old friends and make some new ones, and I felt lucky to wander around the EEOB…
And get a last-minute tour of the West Wing…
And I love Zoe Chu: