By Yasmeen Long, MA
Early in my career, I recruited participants for a study on kidney disease, and one patient asked if he would see the results of the study. I realized that he wouldn’t—he didn’t understand the language used in peer-reviewed studies or the ways the data is interpreted, and he wouldn’t have access to the results, often published in medical journals with a paywall.
This made me realize that research has to have a community benefit and patient impact, so that those impacted by the study can use the results to improve their health.
How can the many different actors in the health equity space align our priorities to drive and implement meaningful change and equity for the long term? This effort needs to be more collaborative and not so siloed, with medical teams here, researchers here, and pain communities way over there. There really needs to be more interaction and engagement to solve these issues for the long term.
To health care providers and researchers, I would say, everybody has biases, regardless of race or ethnicity—so recognize and examine what types of biases you may have that impact your patients’ care, and take steps to address them. Connect with communities in a meaningful way, building trust and relationships.
To patients and patient advocacy organizations, I would say, keep the momentum. Leverage your expertise and power with the health care and research systems. Hold researchers accountable when their research comes out. If the data isn’t available to the community that is being studied, who is that really helping?
Ask patients what they want and need. Value lived experience as credible expertise. Acknowledge, respect, and value patients’ expertise just as much as we do anyone with an MD or PhD. The INvisible Project is one effort accomplishing all of that.
ABOUT YASMEEN LONG, MA
Yasmeen Long, MA, is a director at FasterCures, a center of the Milken Institute—a nonprofit, nonpartisan think tank with a focus on financial, physical, mental, and environmental health. FasterCures seeks solutions in the health care system that prioritize patient needs, with a focus on biomedical innovation, patient engagement, global health, and more. Long leads the center’s health equity, diversity, and clinical trials efforts, bringing together experts to achieve health equity across the biomedical research ecosystem. Her experience spans health equity, disparities, outcomes, policy, clinical research, global health, women’s health, patient and community engagement, and social determinants of health.