This is a lightly adapted excerpt from Jess Rimington and Joanna L. Cea’s book Beloved Economies: Transforming How We Work.
Debbe McCall still remembers how she felt when she was first diagnosed with atrial fibrillation.
“I was devastated. No, I wasn’t devastated; I was pissed,” Debbe recalls. “I was at my absolute healthiest when afib hit, and I was so angry. My mother had four heart attacks before she died, so I knew what my genetics were going to bring to me, [but] I had busted my butt to not have that happen.”
In the wake of her afib diagnosis, Debbe became one of the founding participants of a “patient-powered” research initiative called Heart Research Alliance. It was a collaborative research initiative coordinated by the University of California San Francisco Medical Center, in partnership with multiple heart health advocacy organizations and made possible by grant funding from a federal initiative.
Heart Research Alliance’s work is based on an organizing principle of recognizing the value of patient voices. They work to improve the quality of health-care systems and interventions from a patient perspective, as well as promote deeper research on heart disease—including on how to meaningfully improve quality of life for people living with afib.
While the diagnosis was shocking and upsetting, Debbe was able to find community with other people navigating the same health condition. Through the Heart Research Alliance, she soon connected with a group of fellow afib patients, and the newfound sense of connection, hope, and solidarity—as well as new relationships that deepened into friendships—made a world of difference in her life.
Brooking Gatewood is a self-described “network nerd”—someone who, from a young age, has been working on and thinking deeply about systemic change. She is also a poet and writer, and she recognizes that artistry is an essential element of collaborative social change.
Brooking and her colleague, Rebecca Petzel, were hired by the UCSF to design and facilitate the creation of a patient-powered research network that would identify research questions.
Brooking and Rebecca bring a spirit of both art and science to their facilitation work, which is centered on redistributing power to foster both individual agency and collective intelligence. This orientation made them exceptionally well positioned to support UCSF in making Heart Research Alliance truly patient powered from its inception to its final decisions and research recommendations.
Brooking recalled the process. “The grant required that patients be involved in the design process of how researchers determine what to study,” she says. “We put together a steering committee and there was a thorough go-slow-to-move-fast kickoff process designed to enable participants to build trust and relationships—to actually get to know each other as humans and be able to work together as peers.”
Next, Debbe and other patients designed an initial event. As Brooking shares, “We all designed, with a lot of patient input, an initial event that brought together doctors, researchers, and patients to explore project ideas. In designing the event, participants decided to set very specific ground rules where the patients got one set of invitations and the doctors and researchers got another set, and each was invited to step into an edge of discomfort to challenge their usual ways of operating. And so for the patients, it was ‘please speak,’ and for the doctors, it was ‘please listen.’”
Kathi Sigona, a patient participant, reflected on how this “please speak” approach was key to Heart Research Alliance’s success. “I think what really helped drive the success of the group was the fact that we didn’t have a hierarchy,” Kathi said. “Sometimes patients working with doctors on a different level can be somewhat intimidating. But we became colleagues; we all put our pants on the same way.”
The facilitators of Heart Research Alliance created the conditions for trusting relationships, which allowed patients to truly drive much of the conversations and process. “It was a huge shift that way,” Debbe shares. “And it showed because there were more of us patients than there were of the researchers. We drove the conversations, not them. And every time they tried to use big words, we called them on it, and that would never happen anywhere else.” Debbe emphasizes that the process of having patients “lay the groundwork” for how Heart Research Alliance would operate “had given us the confidence that this was our conference, and we were there to bring researchers into our world, not the other way around, which is the way research has been for hundreds of years.”
Another unique aspect of the Heart Research Alliance initiative was that it paid stipends to all involved—researchers and patient participants. “That made a big difference,” Debbe affirms. “And because of that, most of us who were interested in being in research, like I was, were able to use that as a stepping-stone.” Being paid enabled Debbe and others to spend more time participating and learning with fellow participants, researchers, and doctors without having to worry about missed income from spending time away from their usual work. As a result of the substantial experience Debbe gained in designing research questions and methodologies, she has been able to build a consulting business serving as a patient PI (principal investigator) on federally funded research initiatives—and is even paid to attend and do social media coverage of medical conferences. Kathi also found that participation in the Heart Research Alliance initiative “provided so many of us citizen scientists the opportunity to lead and participate in the planning and execution of clinical trials and research. This model has been very successful.”
After the inaugural event, the Heart Research Alliance was firmly established and kept growing. Although the initial project was time-bound and wound down in 2019, the results continue to reverberate today. Dr. Mark Pletcher of the UCSF epidemiology and biostatistics department was one of the founding members of the project. He shares that the Heart Research Alliance “continues to support deep patient engagement for research studies.” It set a new bar for how patients can participate as peers and leading experts in the shaping of meaningful medical research. For instance, he points to a recent research initiative called BP Home, a randomized trial of home blood-pressure monitoring, which “used the Heart Research Alliance to assemble and support a patient advisory board that helped develop participant onboarding, surveys, and instructional materials.” When results of the BP Home study were ready to share, “they hosted a webinar where results of the study were presented to study participants,” says Dr. Pletcher, “with patient advisory board members and the principal investigator of the study as panelists.” It was the influence of Heart Research Alliance’s approach and former participants, explains Dr. Pletcher, that inspired BP Home to turn the tables on how research results are usually presented and to whom.
As facilitators, Brooking and Rebecca were also deeply affected by the experience and by the powerful results that unfolded from the foundation of authentic, caring relationships patients formed with one another. This focus on relationship-building is something they carried into their subsequent work together with The Emergence Collective, the collaborative consulting experiment they formed after Heart Research Alliance to continue practicing and fostering collective leadership with future colleagues and client collaborators. The relational, power-shifting, and participatory design principles from the Heart Research Alliance project have informed all of their subsequent projects.
Brooking reflects that what most impacted her about Heart Research Alliance was experiencing the ways that members of the patient community “really show up for each other,” and how patients brought this spirit of care and solidarity to everything that the Alliance members did together. As a result of being welcomed into this community, Brooking experienced a shift in perspective. She recalls one moment, early in the process, when this shift started to occur for her.
One of the patients invited me to a 5k walk supporting one of the foundations. That’s the kind of thing that, in the past, I would have thought, “Oh, that’s not exactly work, that’s not on the clock.” But I went and did the walk and wore my Heart Research Alliance shirt, and I remember meeting all these people, and realizing that for so many of the people in the patient communities, these were their best friends in life. Many of these people had known each other for decades and had seen each other through scary near-death moments and surgeries and the loss of friends, and they were all sharing information about what they’re learning about how to live well with their conditions, and it was really powerful. And I remember realizing in that experience, “Oh, this is real relationship.”
Like Brooking, many of the people involved in Heart Research Alliance—patients, doctors, and researchers alike—emphasize the strength of relationships that characterized their work together. This is evident in the continuing collaborations among members today, several years after the formal completion of the Heart Research Alliance. Former participants continue to look out for one another, share new research opportunities and information, and reach out to one another as thought partners and peers when it comes to new medical research questions.
The power of their relationships has kept the Alliance alive in spirit—and is at the heart of its continuing influence on reimagining medical research.
As for Debbe, she has been an active member of patient advocacy groups and networks ever since her experience.
Debbe has found that it’s that sense of solidarity and community that makes an immediate positive difference in people’s lives. “When I welcome new members, that’s one of the first things I say: ‘Breathe. Just breathe and know that you’re not alone. We’re all here, we’ve all been in your spot.’”
Looking back, Debbe understands that “in any patient community, the first thing, when anybody gets a diagnosis, is suddenly ‘I feel alone and isolated.’ And that’s why they reach out to support groups.” Once they do, Debbe explains, many find that “yes, there’s information that we can share; yes, there’s learning about the science. But it’s more about ‘You are not alone.’”