Even on a tough day, it’s hard not to smile while chatting with patient representative Neely Williams. Maybe it’s the passion she brings to patient-centered research as a community partner consultant at the National Institutes of Health and the patient co-principal investigator for the PCORnet Bariatric Study. Maybe it’s her knack for talking about research in a frank, down-to-earth manner that makes it accessible and unintimidating to lay communities. At any rate, Neely is undeniably a strong and positive force in the PCORnet community, and now that she’s joined the PCORnet Steering Committee as one of three patient representatives, her light shines even brighter. Here is her perspective on this role and why it matters:
How did you get involved in clinical research?
I began collaborating with PCORnet’s network partners in the course of doing my ministry work. My background is as a minister, a community advocate, and a community organizer, so I am always looking for new ways to bring communities together and improve them. Clinical research seemed like an enterprise that needed a better bridge to communities, particularly to minority communities like mine. As an African-American woman living in the Deep South who has battled obesity for most of my adult life, I have personally experienced the frustrations of being part of an underrepresented community seeking answers to an under-researched disease. I saw the problem across my community too—when people talked about research, it was always what they didn’t trust about it. PCORnet’s collaborators, inspired by the Network’s initial funder PCORI, were trailblazing a patient-centered research model to resolve that disconnect, and I was excited to join the cause and share my voice. If you know me, you know I don’t do things halfway, so it wasn’t too long before I was serving as a co-investigator and member of the stakeholder advisory board for the STAR-CRN (formerly Mid-South), a PCORnet partner network.
How do you view the changing role of patients in clinical research?
Not so long ago, the notion of patient engagement essentially amounted to what I call “nodding head” involvement. Patients were offered a gift card to listen to a protocol, so investigators could tick off a “patient involvement” checkbox. Researchers weren’t too interested in getting real input, and patients just wanted to get their gift card and go home. Neither saw the value.
Today, something different is happening. Patients have pulled back the blinds of clinical research, and they realize they have a lott to contribute, that they can be changemakers in this research process; they want to be empowered in their health. The PCORnet community and others have recognized the value of the community voice in research and opened doors to let these voices in. As a result, the system is changing.
We know now that research is never going to be effective and meaningful when it is conducted in a silo without real collaboration. We know we need patients and other community stakeholders as a balancing force. Once we have all the voices at the table, we can start building protocols that will not only be effectively executed, but also will deliver meaningful insights that matter to patients and their communities. This is how we build trust and improve patient care, which is, at the end of the day, what both communities and researchers want to see.
What contributions have you made as a patient representative?
We meet once a week to review protocols and brainstorm ideas for building better research or sharing outcomes. We’ve made a lot of progress within PCORnet at integrating the patient voice in studies.
Studies that use PCORnet resources are patient-centered as a rule, but the larger clinical research community would benefit from more patient input as well. One area where I feel I can add value as a patient representative is around ensuring that the engagement efforts being built into a study are strong, realistic, and executable. I remember looking at one study proposal and asking the other members of the Committee where the budget line item for engagement was. The study had great ideas for engaging patients, but I couldn’t see how they would be funded. The response from the author of the protocol was that the engagement budget was built into several other areas and they would pull funds from those areas as needed. I said, “Tell me something. Would you feel okay about baking a cake and not adding in the salt because it’s already included in the butter? Of course not! Patient engagement needs a line item in the budget or it won’t happen.” That got a laugh, but they understood my point and built it in!
How do you see the PCORnet Steering Committee evolving in the coming years?
Right now, three out of 11 Steering Committee members are patient representatives, and I think that’s a good balance. However, we need to keep bringing in fresh insights, so I envision those members changing. We are working now to cultivate other patient representatives who will serve. There is a great energy at the grassroots level of the research process in places like STAR and other PCORnet partner networks. Many people would love to be in this role, but may not know how to begin that process. Kiely [Law], Henry [Cruz], and I were the first to open these doors to the Committee, and now it is our job to mentor and hold open that door to make room for others to come in, too.
What would you like other patients looking to engage in research to know?
We need your voice in research, and there are so many ways to get involved. Not everyone wants to be invested at the level I am, and that’s okay! Any bridge between communities and researchers is a worthwhile investment, even if it is just responding to a five-minute survey. If the research community has a responsibility to follow PCORnet’s lead and open the door to patients and caregivers, then we, likewise, have a responsibility to walk through it.
This is part two of an ongoing series highlighting patient partners on PCORnet’s Steering Committee. Check out this interview with Henry Cruz. Watch this video of Neely Williams and PCORnet coordinating center principal investigator Adrian Hernandez discussing how the engagement of patients has contributed to the network’s initiatives.