The complex care field supports people with multiple physical, behavioral health, and social needs who often experience fragmented, inadequate, and high-cost care. Due to wide programmatic variation and a lack of rigorous research and evaluation efforts, it is difficult to discern what makes successful complex care programs effective. The COVID-19 pandemic, which shed light on existing gaps in care, and the release of high-profile complex care studies in recent years have created new momentum for establishing a patient-centered research agenda to guide complex care efforts that prioritize the experiences and expertise of patients with complex health and social needs.
With funding from the Patient-Centered Outcomes Research Institute (PCORI), the Center for Health Care Strategies (CHCS) developed a complex care research agenda centered around the experiences and expertise of patients with complex needs. Using a rapid cycle learning approach to co-create a patient-centered set of research priorities, the project convened patients, researchers, and clinical leaders to:
- Generate and prioritize key research questions to drive a patient-centered complex care research agenda;
- Identify measurement domains that meaningfully reflect these priorities; and
- Propose one or more approaches to implementing this research agenda in a way that ensures meaningful patient partnership.
Over the course of 16 months, CHCS conducted a literature review and interviews; convened a series of workgroups with patients, clinicians, and researchers; and synthesized stakeholder recommendations in a proposed research agenda to guide ongoing, coordinated efforts to improve the effectiveness of complex care programs.