2019 Annual Report: Stakeholder Engagement

The ADAPTABLE study has a diverse team of Adaptors, led and coordinated by the Heart Research Alliance at the University of California, San Francisco, that serve as patient partners and provide insight on all aspects of the study. Schuyler Jones, MD, co-principal investigator of ADAPTABLE, spoke with two Adaptors, Nadine Zemon and Greg Merritt, to discuss their experience and the importance of stakeholder engagement.

SCHUYLER: I can remember vividly when I met each of you, and I really look forward to revisiting some of your ideas that have helped the trial thus far. First, can you each talk about how you got involved with ADAPTABLE?

NADINE: I got involved with ADAPTABLE because I was part of the Citizen Scientist team at the University of Florida, and ADAPTABLE needed people to help with recruitment there.

GREG: I became a patient advocate partner after having a heart attack in 2012 that left me without a heartbeat for about 30 minutes. After that, I was looking for ways to give back and joined a couple of patient advisory councils at the University of Michigan, which ultimately connected me to ADAPTABLE.

SCHUYLER: Nadine, can you tell us about some of your work in recruitment? For example, how you helped in transforming the plain invitations into lively materials?

NADINE: Initially they had this dull letter, and I was able to say, “This doesn’t really appeal to me.” My input helped make our invitations more attractive to capture people’s attention and explain difficult-to-understand concepts like big data.

SCHUYLER: Sites loved that idea. That experience, for me, drove home that we have to use ideas from everybody,
especially from patient partners, to engage potential study participants. Greg, one of your early ideas involved engaging people in cardiac rehab clinics. Can you talk about your experience being an Adaptor?

GREG: I’ve found the process to be a true partnership, which is different from experiences I’d had in the past. I joined a different trial just after my heart attack, but in the end, I had no idea what role my participation played. In many projects when you work as a patient partner, it’s easy to ascertain whether you’re just a token patient trying to check some box. But back to the very first ADAPTABLE meeting I attended, I remember thinking, “Wow, this is different; they really want our opinion.” Through ADAPTABLE, I feel like I’ve had an impact right from the start.

NADINE: I agree; I feel like our comments are not only heard, but also receive follow up. We met weekly and were integrated right from the beginning. We discussed everything from avoiding jargon to safety concerns. Having a venue to make our voices heard has established transparency and trust.

SCHUYLER: I’m glad you both can feel how much your perspective matters to us. From the get-go, we said that even though we haven’t done patient engagement at this scale before, we need to go all in. We decided to have Adaptors on the executive committee and the steering committee; we committed to meet in person so that you could review anything that touched our participants. In short, we decided that patient partners needed to be involved in every aspect of the trial.

GREG: It’s so important to involve patients because their lives are actually affected by the research question. I’d like to know which dose of aspirin is most effective. If the results say I could prevent another heart attack by switching doses, I’d like to change tomorrow. Researchers should be asking questions in partnership with the people who have the most at stake.

SCHUYLER: I agree. My connection with our Adaptor family has influenced how I practice medicine and think about clinical research. It’s made me realize that we need to continue to partner at every step, including at the planning phases. I think that we’ve now really embraced giving patients the opportunity to come in, get matched to their interests, and contribute meaningfully.

This article originally appeared in the DCRI’s 2018-2019 Annual Report. View more articles from this publication.