Developing a patient-centered complex care research agenda: Environmental scan

With funding from the Patient-Centered Outcomes Research Institute (PCORI), the Center for Health Care Strategies (CHCS) led the development of a Patient-Centered Complex Care Research Agenda. This project was motivated by the desire to spur more rigorous research and evaluation efforts in complex care, recognizing that its currently limited evidence base and wide programmatic variation have made it difficult to determine what aspects of complex care are most effective and for whom. As part of this effort, it is critical that complex care research focuses on understanding patients’ experiences of care, and how complex care services help patients achieve their health and well-being goals. Traditionally, “success” in complex care programs has been defined by the amount of money saved through reductions in health care services and not by what matters most to patients. There is much more for complex care to learn about who it helps, why it is helpful, what kind of value it generates, and what it should look like to best support patients’ needs and goals. The Research Agenda aims to: 1. Meaningfully partner with patients and communities in research; 2. Focus on a prioritized set of research questions; and 3. Measure outcomes in a more consistent and patient-centered way.

As a first step in developing this Research Agenda, CHCS conducted an environmental scan including: (1) interviews with various complex care stakeholders; and (2) a literature review to assess the current state of complex care research and identify gaps and opportunities. CHCS interviewed 20 individuals who bring their own perspectives on complex care, including people with lived expertise of complex care, researchers, providers, and organizational leaders. In addition, CHCS reviewed more than 40 resources, including peer-reviewed journal articles, reports, thought pieces, and other non-peer-reviewed literature.