Over the last five years, the health services research enterprise has come under internal and external critique for the way in which it has dealt with racism and health equity while purporting to be about improving human health in objective ways. Hardeman and Karbeah challenged how research questions were structured and framed (and who got to ask them); lack of rigor in the methodology of designing studies/models, analyzing them, and interpreting their findings; and lack of inclusion of those affected by inequities in the process.
Over the last three years, our team at WE in the World has witnessed the power of grassroots to grasstops mobilization in the research agenda–and the kinds of methods and studies communities experiencing inequities would choose to do if given the opportunity and access to resources. Through Communities RISE Together, we convened an unprecedented collaboration of Black, indigenous, Latinx, migrant worker, and older adult serving organizations that collectively reached 1009 of the most socially vulnerable communities in 38 states of the country. The RISE partners and communities knew that resources intended for pandemic relief weren’t getting to communities experiencing inequities; they collectively sought and advanced nearly $30 million in funding to trusted organizations in communities experiencing inequities and trusted them to use the resources in ways that made sense for them.
Communities got to choose measures that mattered to them (and chose them from a library of validated measures that reflected community priorities) and designed strategies and measures in ways that worked for them. A support team worked with communities to help them articulate their driver diagrams and logic models–and build their capacity to learn. A real-time data pipeline was built, and what began as a response became a natural experiment in community-driven learning. We didn’t have to have the questions or the answers–what we needed to do is create the space for our communities to develop their own questions and thinking and have the tools, supports and resources to answer them. They asked such questions as: Would prison record expungement clinics be opportune places to help people learn about vaccines or would barbershops and beauty salons work better? Could food shift trust? How does well-being and trust relate to loneliness in older adults–and how did that vary for migrant workers? Their questions and strategies were fascinating, insightful, and productive. It made me wonder how many insights and research questions we were missing while we were so busy trying to do things for communities. In a government of the people, by the people, and purportedly for the people, building a path for communities to define and drive their own research agenda around health equity felt deeply meaningful.
As our communities were gaining equity (ownership) in the process of collecting data and identifying questions that mattered to them, our national context began shifting as national organizations and federal agencies began to inject equity in a serious way in their efforts. The National Institutes for Health and Common Fund launched Community Partnerships to Advance Science for Society (ComPASS) to “1) develop, share, and evaluate community-led health equity structural interventions that leverage partnerships across multiple sectors to reduce health disparities and 2) develop a new health equity research model for community-led, multisectoral structural intervention research across NIH and other federal agencies.” NexTRAC’s ENGAGE workgroup is developing new frameworks, tools and policies for community engagement by clinical researchers. All of Us sought to close racial and other gaps in inclusion in research studies. All of these offer promising approaches along the continuum of developing, designing, implementing, analyzing and publishing research in a way that could advance equity.
AcademyHealth took it a step further, engaging health service researchers, federal agencies, equity practitioners and communities to co-develop a research agenda for high value, equitable care. If I’m being honest, although I felt my voice was always welcome, and participated, I entered into some of these processes without a lot of confidence that real change would happen. I never expected to see elements like “Dismantling structural racism from within our healthcare system”; “Representative leadership committed to value, diversity, equity, and social justice”; “Mitigation of adverse impacts of the social determinants of health individually and at the population level”; and “Issues of governance and both patient and societal accountability” emerge as primary elements of the research agenda without requiring substantial advocacy. While the long-term impact of this work will depend on the uptake, outcomes and impact of this research agenda over time, initiatives like these give me hope that perhaps we are at a turning point in our own profession’s practice of health equity–one that understands and owns that in a system of structural inequity, it is those who hold power and privilege in the system, not those who are impacted by it, who have the greatest changes to make.
Read the first, second, and third blog posts in this five-part series.