Although the complex care evidence base continues to grow, meaningful involvement of people with complex needs in the research process is lacking. Patients are often not involved in the development of research and as a result, researchers often measure “success” as defined by health systems and health plans, typically based on reduced utilization and costs. 

Through support from the Patient-Centered Outcomes Research Institute, the Center for Health Care Strategies published a Patient-Centered Complex Care Research Agenda to help move the field closer to meaningfully involving people with lived experience of complex care in the research process.

The Better Care Playbook spoke to two individuals who helped develop the Research Agenda — Hemal Kanzaria, MD, Associate Professor of Emergency Medicine at University of California San Francisco and LaKeesha Dumas, a social justice, community, and behavioral health advocate and founder of None Left Behind — to learn more about how involving people with lived experience in research can help strengthen the complex care evidence base.