By Katie Wilkes, SolSurvivors Oregon
For the past two years, I’ve been fortunate to receive a scholarship to attend the Patient-Centered Outcomes Research Institute (PCORI) annual meeting in Washington, D.C. This conference, which started in 2015, brings together over 1,000 patients, caregivers, researchers, clinicians, policy makers, insurers and other health care stakeholders in one room to figure out how we can work together to improve the health and well-being of our communities. At PCORI meetings, we spend a lot of time talking about how we can translate what we learn from clinical trials into the real world. In this spirit of openness and transparency, I wrote two posts on my personal blog in response to the 2015 PCORI Annual Meeting, half expecting no one would ever read them. I had no idea how many people would end up reading those posts, including a number of staff members at PCORI and several of my friends at the Colorado Foundation for Public Health & the Environment!
At the close of the first day of PCORI’s 2016 annual meeting, I’m pleased to report that PCORI seems to be listening to to our feedback. Last year, several of us noted that we’d love to see more patients and caregivers during the conference’s plenary sessions. This year, Stephanie Buxhoeveden gave a phenomenal opening keynote chronicling her journey from ambitious nursing student to MS patient to nurse for MS patients. While we often characterize ourselves as either patients or researchers, her talk was a great reminder that many of us wear multiple hats. In fact, I would argue that those of us who wear multiple hats--whether it’s clinician and researcher or patient and health care stakeholder--are inherently better at patient-centered research because we can draw from our diverse experiences and bridge the gap between disparate stakeholder groups. There was much Twitter chat about this topic throughout the conference, so I hope to see the "multiple hats" topic get more attention at future PCORI meetings.
The panel discussion following Stephanie’s talk included individuals representing various perspectives--a self-described “good-looking Mexican guy in a wheelchair,” an advocate for family caregivers, a legislative advocate, a patient co-investigator, and a nurse navigator. Each panelist was an articulate, insightful contributor, and while plenary panels tend to be more theoretical than practical, I found the conversation had a few solid takeaways, including:
- We need to educate patients about clinical trials before they’re diagnosed with a disease.
- It’s not enough to educate patients on how to work with researchers. We need to educate (and incentivize!) researchers on how to best work with patient advocates.
- If you neglect the family caregiver, you’re creating another patient.
Prior to Thursday’s plenary session, those of us who received a scholarship to attend the meeting were invited to participate in a pre-conference workshop at a neighboring conference center. This workshop included a variety of short presentations from PCORI staff members, funded researchers and patient partners, and others. During the workshop, we heard from PCORI’s Engagement Officer that some communities have a longstanding distrust of the health care system and medical research in general. Patient engagement can help build trust to breakthrough to those who have been underrepresented in research. Although there’s no “one size fits all” approach to engagement, the most successful partnerships do tend to have a few things in common. This includes trust, respect, authenticity, open communication, and a clear division of labor.
We also spent some time talking about how to build your social media presence as a patient advocate. This part of the presentation was a bit rudimentary for those of us who are already very active on social platforms, but it was important information to share with the group at large. Although there’s plenty of work I’ve done face-to-face, when it comes to melanoma advocacy, I’ve made a tremendous amount of connections sharing my story through this blog, Twitter, and on Facebook. There’s no way I would be nearly involved in outreach or research advocacy today if it weren’t for social media. For those who are new to social media, PCORI’s social strategist encouraged starting conversations with others you follow on social sites and adding your thoughts to existing discussions. Opening up in a public forum about your disease experience can be pretty unnerving, but in my own experience, other advocates and “influencers” tend to be pretty approachable and helpful for new folks who are just getting started.
The last presenter at the scholarship pre-conference session was Tony Coehlo, former U.S. Representative and sponsor of the Americans with Disabilities Act. Like many of the other presenters, Mr. Coehlo opened his talk by sharing his own experience as a patient, which ultimately lead to a very active political career. His story, like many of the others we heard throughout the day, was a great reminder to all of us that while the work we do can be really, really challenging, it’s important work, and if we’re ever going to see real change in the U.S. health care system, we’re the ones who need to make it happen.
Stay tuned for more on days 2 and 3!
This post originally appeared on PrettyinPale.org.