A patient-centered complex care research agenda: Recommendations for collective action

Although there are many different programs that care for people with complex health and social needs, there is little high-quality research evidence highlighting what aspects of complex care are most effective and for whom. Most research uses cost and utilization to assess complex care program success, yet this narrow lens ignores what matters most to patients in achieving their goals for quality of life and well-being.

Research must include patients — across the planning, design, implementation, and evaluation stages — to fully understand the impact and value of complex care. Recognizing this need, the Center for Health Care Strategies (CHCS) developed the Patient-Centered Complex Care Research Agenda. The Research Agenda, developed through support from the Patient-Centered Outcomes Research Institute (PCORI), provides a guide for collaboratively improving complex care with a priority on the experiences of people with complex needs. It was co-created by more than 100 stakeholders, including a Patient and Family Advisory Board.

This CHCS webinar, made possible by PCORI, highlighted the Research Agenda’s recommendations and opportunities for adopting a person-centered approach to complex care research. The webinar featured a panel discussion sharing insights from patient and health care partners who helped create the Research Agenda.

Watch webinar recording here.