A research team from Renton, Wash.-based Providence has launched an interactive toolkit to help health systems boost equity in medical research.
The toolkit was developed on insights gathered after two years of research and community outreach across Los Angeles, Boston and South Dakota, according to a Jan. 12 news release from the health system.
Kristi Roybal, PhD, led the study as part of the Providence Health Research Accelerator. The group’s findings were published Jan. 2 in the Journal of Community Genetics.
Dr. Roybal shared more with Becker’s about the role health systems can play in making medical research more equitable and, in turn, more comprehensive.
Editor’s note: Responses have been lightly edited for clarity and length.
Question: The study emphasizes building trustworthiness rather than simply asking for or expecting trust. How do you define trustworthiness in the context of clinical research? What advice do you have for health systems looking to improve traditional recruitment strategies?
Dr. Kristi Roybal: We define trustworthiness as the perceived reliability and integrity of clinical research as demonstrated through the actions and practices of clinical researchers, study sponsors, regulatory boards and health system leadership. These practices center participants in clinical research by including their cultural contexts, preferences, needs and motivations. In the United States, we have a long history of exploitative and harmful medical research practices, particularly with racially and ethnically marginalized communities, that have extracted data from or performed experiments on participants with very little concern for their human dignity, well-being and the return of benefits from medical advancements born from their very exploitation. We also have seen an erosion of trust in healthcare more broadly, with skyrocketing costs, limited access and substandard quality of care as key drivers. As clinical researchers, the onus of responsibility is on us to demonstrate we are worthy, that participants can have confidence in our credibility, transparency, and ethical conduct of research that respects their autonomy and rights.
For health systems looking to improve traditional recruitment strategies, we have a couple of pieces of advice. First, we suggest a process of looking both inward and outward to critically reflect on their perceived trustworthiness for the patients and communities they seek to include in their research. Each health system operates in unique sociocultural contexts. Our recently launched biospecimen research best practices toolkit outlines a variety of actionable patient and community-centered strategies that can support health systems’ in this process. Second, we want to emphasize the need for an ongoing commitment to building trustworthiness; it’s not a final destination or one-time checkbox. As clinical researchers, we have to be committed to continually reflecting on our historical and current practices, listening to our patients and community members and modifying our practices to do better.
Q: You outline six themes: cultural responsiveness, community partnerships, accessibility, meaningful purpose, mindful incentives and trusted messengers. Which of those is most often underdeveloped? What are the first practical steps a hospital or health system leader can take to build on that theme?
KR: While each of these themes is likely to be at different levels of development across unique health system contexts, we recommend health systems start with cultural responsiveness and inclusivity. This theme is foundational for the five other best practices we share and we believe it lays the groundwork for health systems and clinical researchers to build their own culture of continuous reflection, learning and action to build their trustworthiness.
In our interactive toolkit, we offer a set of guiding questions for each best practice. Our intention with these questions is to support the reflection process such that each health system can identify where they can start making meaningful changes in their clinical research practices. In our experience at Providence, we have found that when we are open to asking ourselves where we fall short and what we need to learn to do better, we create the conditions to transform how we do research.
Q: In your focus groups, what surfaced as the most significant barrier or barriers to research participation? Which barriers are most within a health system’s control to address?
KR: It’s hard to say what the most significant barriers are because these will look different across cultural and health system contexts. Our findings also support a comprehensive approach to addressing barriers and improving recruitment of diverse participants. With that said, through this current study and others we have conducted to better understand barriers and facilitators to participation in research and cancer screening, two barriers rise to the top. The first is convenience and accessibility. If we want inclusive clinical research, we have to be mindful of the expectations and costs associated with participation. We believe that reducing or eliminating these barriers is well within a health system’s sphere of control and prioritizing them communicates to participants that their participation matters.
Health systems can also better support clinical researchers with communication about clinical research study opportunities. Patients and community members consistently share that a lack of comprehensive information about studies and their rights as participants, in lay language, is a barrier to their participation. We provide strategies that can be leveraged to evaluate and improve information sharing practices to ensure study materials provide comprehensive information in a format that connects best with patients and community members.
Q: Many health systems have equity strategies tied to cancer outcomes. How should leaders think about increasing diverse participation in cancer research as part of a broader cancer equity roadmap?
KR: With a robust, evolving and promising precision oncology landscape, we will fall short in meeting our cancer equity goals if we don’t commit ourselves to conducting biospecimen cancer research that includes the rich diversity of all the patients and communities we serve. Because our biorepositories are not currently very diverse, our advancements in cancer prevention, detection and treatment are driven by biospecimen research findings that have limited validity and generalizability beyond the overrepresented White population. These practices will only deepen cancer inequities for Black, Latino, and American Indian communities.
A commitment to diversifying participation in cancer research in health systems’ strategic road maps is an incredibly important step toward cancer equity. It’s not the only one though. Once we make meaningful changes in our biospecimen research recruitment practices and diversify our biorepositories, we then have to ensure that the benefits of the research are equitably distributed. Structurally privileged communities are often the first to benefit from medical innovations. For example, novel cancer treatments or screening methods with a high price tag may be directly marketed to these communities, but not racially, ethnically or socioeconomically marginalized communities. A key insight from our study participants is the tensions that can arise between public-interest research goals and commercial development pathways of companies that generate medical innovations leveraging the results of those initiatives. We encourage health systems to reflect on this tension and take steps in collaboration with the patients and communities they serve to identify and establish mechanisms that support the return of benefits in their cancer equity road maps.
