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A BETTER Way: New Penn Medicine Center Will Advance Diversity in Cardiovascular Disease Clinical Trials

By Scott Harris

A doctor holds a stethoscope to a patient's heart

Improving racial diversity in clinical trials will ultimately lead to better care at the bedside for all patients. Penn Medicine has championed this cause in recent years.

Now, with support from the American Heart Association, Penn Medicine has formed the BETTER Center (Behavioral Economics to Transform Trial Enrollment Representativeness), designed to foster greater diversity, equity, and inclusion among people who participate in clinical trials designed to improve the prevention and treatment of cardiovascular diseases. The BETTER Center will seek to more actively engage and recruit individuals from historically underserved racial and ethnic groups, women, and people of low socioeconomic status, among other historically under-represented groups.

“Randomized trials, which are the bedrock of clinical research, do not typically enroll groups of patients that closely resemble the population of patients with the disease or the condition of interest,” said Scott D. Halpern, MD, PhD, director of the new center and the John M. Eisenberg, M.D. professor of Medicine, Epidemiology, and Medical Ethics and Health Policy in the Perelman School of Medicine at the University of Pennsylvania. "The consequence of limited diversity in clinical trials is that the resulting findings may not apply to everyone. That creates both a justice problem and a problem with the quality of the evidence we have to guide health care decisions.”

For example, Halpern said, about 40 percent of Americans with heart failure identify as Black, but Black patients often comprise less than 10 percent of all participants in heart failure trials.

“What we want to see is an appropriate participation ratio along any axis of diversity, whether it be race, sex, ethnicity, or socioeconomic status,” Halpern said.

The center’s work is a multifaceted national and local effort that extends well beyond the walls of Penn Medicine. Through the new funding via the AHA — as part of its Strategically-Focused Research Network (SFRN) on the Science of Diversity in Clinical Trials — the BETTER Center will include researchers from Penn, Emory University, Grady Health Systems in Atlanta, and MedStar Washington Hospital Center in Washington, D.C.

In Philadelphia, initiatives will involve reaching out to communities across the city, including Penn’s neighbors in West Philadelphia, to help ease mistrust of clinical trials and health care in general.

“Patient engagement, specifically advocating on behalf of racially minoritized groups, is a key draw for me,” said Nsenga Farrell, the center’s senior manager of communication and engagement. “My work at the center means going where patients live, work, play, and worship. For example, I’m getting to know community health workers and leaders in West Philly churches and mosques and will continue to forge these connections over the coming year. It’s a great feeling to work with investigators who are willing to really be open to this journey.”

Making it Happen

As its name indicates, the BETTER Center will leverage the field of behavioral economics to increase participation among disenfranchised groups.

“Behavioral economics focuses on how people make decisions, and how those decisions can be modified based on how choices are framed,” Halpern said. “Prior studies have shown that behavioral economics not only can augment the pace of recruitment, but can also augment the diversity of recruitment.”

Two of the main tools from behavioral economics that Halpern plans to use in recruitment efforts are creating incentives for trial participation and setting defaults — pre-set courses of action, such as trial enrollment — that take effect if a decision-maker does not opt out by choosing something else.

Penn Medicine is widely considered a leader in applying behavioral economics to health care decision-making. The BETTER Center will be situated within Penn’s Palliative and Advanced Illness Research (PAIR) Center, which uses behavioral economic principles to enhance serious illness care, and will collaborate closely with Penn’s Center for Health Incentives and Behavioral Economics, which uses similar methods to address major public health challenges, from smoking cessation to obesity.

In addition to focusing on improving diversity in future clinical trials, the center also plans to build and widen the educational pipeline for new leaders who can continue advancing diversity in future trials. This will include training at least three post-doctoral fellows and at least six undergraduate students from historically Black colleges and universities and similar institutions.

The center joins other Penn Medicine initiatives to increase diversity and inclusion in clinical trials. Another, spearheaded by the Abramson Cancer Center (ACC), gained national attention for doubling the percentage of Black participants in its clinical trials. ACC’s community engagement included culturally tailored marketing strategies; new partnerships with faith-based organizations serving Black communities; and pilot programs to address transportation barriers. The efforts reached more than 10,000 people.

With these encouraging improvements, and with the BETTER Center designed to advance the science of how to ensure diversity in cardiovascular disease trials, Penn leaders are optimistic about addressing what has proven to be a stubborn and daunting challenge.

“I don’t think I’ve ever had the opportunity to work with such an incredible team as we’re bringing together with the BETTER Center,” Halpern said. “Investigators from multiple disciplines, various personal backgrounds, and complementary areas of expertise are all united around a common goal. It’s going to be exhilarating, and I can’t wait to roll up our sleeves and tackle this problem that we’re all quite passionate about.”

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