Community Activist's Work Influenced by Service on PCORI Advisory Panel

My time on the PCORI Patient Engagement Advisory Panel (PEAP), as both a member and chair from 2017 to 2020, has had a tremendous impact on my thinking about patient engagement. I learned so much from the other panelists and was constantly inspired by their insights and commitment to finding ways to keep patients at the heart of everything we do in health care.

I had spent many years working in the disabilities community, most recently working on policy and consumer advocacy issues related to Medicaid managed care plans. I was asked to organize and manage a patient advisory panel that was part of a PCORI-funded project looking at the effects of the move to managed care on individual care coordination plans of children with special healthcare needs.

Learning about PCORI’s Commitment to Patient Engagement

At that point I knew very little about PCORI. I soon discovered, however, the commitment PCORI had made to developing the science of patient engagement. Their expectations for how projects were to engage patients were very similar to the person-centered planning processes I had been using in programs serving people with disabilities.

I also learned that PCORI was very serious about its advisory panels and was encouraged to consider applying to become part of the PEAP. I saw it as an opportunity to dig deeper into the idea of patient engagement. I wanted to learn more that I could bring back to my community connections in the disability community. I could see ways that what PCORI had been learning about patient engagement might be applied to how we organize advisory committees in other settings.

I learned so much from other members on the PEAP and from the PCORI staff. And, I was able to apply some of what I learned to efforts to improve the consumer advisory councils in several of our state agencies.

Bringing Panel Experience to Work with Justice-Involved Individuals

What I had not anticipated, however, was how my participation on the PEAP and the personal insights I gained would also reinforce my work with justice-involved people. While I was on the PEAP, I was also part of a faith-based group that developed a pre-/post-release program for incarcerated men. As we developed the program, several concepts that I had learned through PCORI and my work on the PEAP as keys to effective patient engagement also seemed to make sense as we encouraged these men to think through what they needed for successful reentry into their communities.

We have built our program around the idea that a successful reentry program must include a focus on the development of trust, providing open and honest feedback, and respectful support of the justice-involved person’s right to make their own choices. We place an emphasis on actively listening to each man’s perspective. Our goal is to help them in ways that they find most valuable, rather than just in ways we think might be needed.

Meaningful Opportunity to Learn, Share

There are undoubtedly many worthwhile activities competing for your time and attention. But if patient engagement is important to you, I strongly encourage you to take action now and apply to become an advisory panel member. This is the best opportunity I have seen to learn and share insights from others who are also knowledgeable and passionate about this issue. It’s a chance to become part of a focused effort to make meaningful patient engagement an integrated and expected part of our healthcare systems.

Applications and nominations are due Thursday, March 31, 2022, by 5 pm (ET).