In 2021, Genentech Health Equity Innovation Fund grantee Henry Ford Health (HFH), a Detroit-based healthcare system, launched the Participatory Action for Access to Clinical Trials (PAACT) project to improve representation of the Black/African American community and other historically underrepresented groups in cancer clinical trials.

Even with thousands of trials under their belts, a diverse clinical workforce and other prerequisites for inclusive research, HFH was struggling to enroll representative clinical trials. That’s when Dr. Evelyn Jiagge, principal investigator of PAACT, began to test a hypothesis that HFH was struggling because it had not yet earned the trust of local patient communities.

To change this, PAACT went straight to the source, engaging a steering committee of community members and organizations. Dr. Jiagge’s team focused on understanding both the motivations that influence clinical trial participation among Caribbean, African and African American communities and healthcare providers’ perceptions of why they don’t participate in trials. Then, PAACT and their community partners co-created recommendations for HFH to pilot to see if they could improve clinical trial enrollment practices. The recommendations centered around a core insight: that patients are more willing to participate in trials if the healthcare system makes them comfortable with the process.

With recommendations in hand, PAACT shared their findings with HFH providers and senior leadership, emphasizing how diversifying clinical trials would require building and sustaining reciprocal community relationships. PAACT also began implementing the communities’ recommendations by inviting the steering committee to grand rounds to ask questions of HFH staff and including them in all presentations of their findings. Critically, PAACT does not make decisions without community partner approval, an approach that is taking hold across HFH. For instance, one of the requirements for a new cancer center director is that they incorporate PAACT’s findings into their larger strategic approach by including community stakeholders in institutional decision-making.

We asked Dr. Jiagge to reflect on how this project is reimagining what the healthcare system can be by prioritizing trust, accountability and support from both leadership and community partners.

What has been the impact of the project so far?

There has been full systemic change. Three years ago, no one was taking steps to address BIPOC representation in clinical trials. Now it’s a discussion all the way up to leadership levels to address policy changes such as enabling doctors to spend more time with patients explaining clinical trials and changing our clinical trial system to require more diverse participants.

Considering the large Black population we serve, this has the potential for significant impact. The initial phase of this work was focused on understanding the problem and identifying recommendations – now, we’re co-creating interventions, and the community is beginning to trust us more than they had anticipated because we empowered them to trust us by giving them a seat and listening to them. Hopefully this will also be an example for BIPOC-serving institutions across the country.

What learnings would you share with others?

Be flexible and willing to listen to the community. As the work goes on, they will eventually say, “now we trust you because you’re listening to us.” But it’s a process – it won’t happen in a day. You need to let them ask questions and engage directly with your leadership. They want to be at the table when decisions are being made. Once they trust you, they’ll introduce you to the broader community. Also, you need to share resources – a third of our funding goes into the community and all of our community partners are paid.