A Person-Centered, Registry-Based Learning Health System for Palliative Care: A Path to Coproducing Better Outcomes, Experience, Value, and Science

Background: Palliative care offers an approach to the care of people with serious illness that focuses on quality of life and aligning care with individual and family goals, and values in the context of what is medically achievable. Objective: Measurement of the impact of palliative care is critical for determining what works for which patients in what settings, to learn, improve care, and ensure access to high value care for people with serious illness. Methods: A learning health system that includes patients and families partnering with clinicians and care teams, is directly linked to a registry to support networks for improvement and research, and offers an ideal framework for measuring what matters to a range of stakeholders interested in improving care for this population. Measurements: Measurement focuses on the individual patient and family experience as the fundamental outcome of interest around which all care delivery is organized. Results: We describe an approach to codesigning and implementing a palliative care registry that functions as a learning health system, by combining patient and family inputs and clinical data to support person-centered care, quality improvement, accountability, transparency, and scientific research. Discussion: The potential for a palliative care learning health system that, by design, brings together enriched information environments to support coproduction of healthcare and facilitated peer networks to support patients and families, collaborative clinician networks to support palliative care program improvement, and collaboratories to support research and the application of research to benefit individual patients is immense.