“Conducting clinical and health services-related research is important and has the potential to improve public health, but there is a long history of medical research harming communities and undermining trust,” said Michael K. Gusmano, professor of Health Policy at the College of Health. When this happens, “people are unwilling to take interventions and participate in research, which contributes to a decline of trust in the institution.”
To address the issue and improve trust within research, Gusmano has joined a team of scholars to study organizational trustworthiness as it relates to community-engaged research. The study, entitled “Teaming Researchers Up with Stakeholders to Test Trustworthy Engagement & Measure: TRUST TEAM,” is funded by PCORI (Patient-Centered Outcomes Research Institute). This independent, nonprofit organization funds research that provides patients, caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions.
Rather than asking how we can get people to trust researchers,“trustworthiness focuses the lens back on the organization, back on the clinicians and researchers to get them to think, what do you need to do to improve your trustworthiness?” explained Gusmano. “What are you doing that should allow people to put their trust in you? Are you worthy of that trust?”
The study seeks to understand the diverse perspectives of patients, clinicians, researchers, and community-based organizations regarding organizational trustworthiness connected to research, and how it shapes the willingness of people to engage in research. Then, how should trustworthiness be measured and evaluated over time?
In the first phase of the study, Gusmano will help convene a team of experts including researchers, ethicists, clinicians, and organizational experts for meetings at The Hastings Center, to identify ideas about how to most effectively define and measure trustworthiness.
The results of this process will be used in the next phase of the research to start a broad public discourse with patients and other stakeholders using World Café methods. The World Café format involves simultaneous conversations around an issue or topic to connect with a large group of individuals and hear diverse perspectives. The results of the meetings at The Hastings Center will provide the World Café participants with useful background information about the topic. Engaging with the community on the topic of trustworthiness in this way takes a community-based participatory research approach, a core value of the College of Health.
All of these insights from the diverse research community will shape the team’s final recommendations, which will help hospitals, health systems, and other research organizations to systematically measure trustworthiness. Gusmano joins a team of experts from The Hastings Center (a nonprofit, nonpartisan bioethics research institute), University of Pittsburgh, Texas Health Institute, Community-Campus Partnerships for Health, NYU Grossman School of Medicine, and the University of Mississippi. Biostatistician John Hughes, a COH faculty member, is a consultant on this project.
The project begins in January 2025 and will last for several years. Researchers will meet at The Hastings Center in early 2025, followed by the World Café efforts and the dissemination of the measures of trust. According to Gusmano, the study aims “to encourage organizations that are conducting medical research to do so in a way that is more ethically sound, to do a better job of promoting the public interest.”
Ultimately, the goal is to develop useful metrics of trustworthiness that will be used by the organizations conducting research, as well as payers, to create a better standard for research and to evaluate what effect it has on the trust of the public, he said
