Providence study: Trust gap drives shortfall in medical research diversity
The investigation sought to address health disparities and improve outcomes for groups underrepresented in medical studies. The findings supported the development of a best practices framework for building trust and increasing research biospecimen diversity.
A recent Providence study published in the Journal of Community Genetics outlines how health systems can build trust with racially and ethnically diverse communities to enlist their participation in critical medical research.
Kristi Roybal, clinical research scientist with the Providence Health Research Accelerator (HRA) and lead author, said a primary goal of the study was to identify strategies to address the barriers that prevent racially and ethnically diverse communities from participating in medical studies. This research aims to address health disparities and improve outcomes for populations that are underrepresented in medical studies.
“We wanted to learn about these communities’ information needs and culturally appropriate approaches for recruitment into biospecimen research so we can increase diversity in our biorepositories at Providence and improve colorectal cancer prevention and treatment,” she said.
Although researchers nationwide have access to extensive biological data from white participants, there is limited data from Black, Latino and American Indian communities. This gap hinders researchers’ ability to understand why diseases – such as colorectal cancer – disproportionately affect these populations compared to their white counterparts, and it narrows the development of more comprehensive prevention strategies and treatments for all populations.
“Our participants emphasized the importance of trustworthiness in biospecimen research and they called on us as researchers to demonstrate that trustworthiness. The best practices framework we’ve developed presents actionable strategies we can adopt to earn this trust and increase diversity in biospecimen research to advance health equity.”
- Staci Wendt, Ph.D., director of research for the Providence Health Research Accelerator
The study, conducted between 2022 and 2024, consisted of outreach and research led by Providence in collaboration with the University of California, Los Angeles and Massachusetts General Hospital. The team interviewed researchers from several states who had experience recruiting racially and ethnically diverse participants into biospecimen research. Following these interviews, the research team conducted 21 focus groups with 101 Black, Latino and American Indian patients and community leaders from Los Angeles, Boston and South Dakota.
After analyzing the data, the team developed a best practice framework that other researchers and health systems can leverage to build trustworthiness and increase diversity in biospecimen research. The framework consists of six themes: cultural responsiveness and inclusivity; community-based partnerships; convenience and accessibility; meaningful and compelling purpose; mindful incentives; and trusted messengers and information sharing.
“Our participants emphasized the importance of trustworthiness in biospecimen research and they called on us as researchers to demonstrate that trustworthiness,” said Staci Wendt, Ph.D., director of research for the HRA. “The best practices framework we’ve developed presents actionable strategies we can adopt to earn this trust and increase diversity in biospecimen research to advance health equity.”
The team is now using its findings to build a toolkit for researchers to use in their work with Black, Latino and American Indian communities. This resource will help researchers learn about and leverage patient- and community-centered strategies to increase diversity and advance equity in biospecimen research.
About Providence
Providence is a national, not-for-profit Catholic health system comprising a diverse family of organizations and driven by a belief that health is a human right. With 51 hospitals, more than 1,100 physician clinics, senior services, supportive housing, and many other health and educational services, the health system and its partners employ more than 129,000 caregivers serving communities across seven states – Alaska, California, Montana, New Mexico, Oregon, Texas, and Washington, with system offices in Renton, Wash., and Irvine, Calif. Learn about our vision of health for a better world at Providence.org.
About Providence Swedish
Providence Swedish has served the Puget Sound region since the first Providence hospital opened in Seattle in 1877 and the first Swedish hospital opened in 1910. The two organizations affiliated in 2012 and today comprise the largest health care delivery system in Western Washington, with 24,000 caregivers, eight hospitals and 244 clinics throughout Western Washington – from Everett to Centralia. A not-for-profit family of organizations, Providence Swedish provides more than $545 million in community benefit in the Puget Sound region each year. The health system offers a comprehensive range of services and specialty and subspecialty care in a number of clinical areas, including cancer, cardiovascular health, neurosciences, orthopedics, digestive health and women’s and children’s care. For more information, visit providence.org/swedish.