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

Journal of Palliative Medicine
Arif H KamalSteven Z Pantilat

Abstract

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. 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. 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. Measurement focuses on the individual patient and family experience as the fundamental outcome of interest around which all care delivery is organized. 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. The potential for a palliative care learning ...Continue Reading

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Citations

Dec 2, 2017·Journal of Palliative Medicine·Joan M TenoRuth Engelberg
Jan 28, 2020·Advances in Neonatal Care : Official Journal of the National Association of Neonatal Nurses
Feb 6, 2020·Journal of Clinical Oncology : Official Journal of the American Society of Clinical Oncology·David C CurrowJane L Phillips
Nov 28, 2018·BMJ Open·Justin KeenJackie Whittle
Sep 21, 2018·American Society of Clinical Oncology Educational Book·Ethan BaschGalina Velikova
Jul 21, 2021·Health Research Policy and Systems·Diana SarakbiShams B Syed

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Software Mentioned

Quality Data Collection Tool ( QDACT )
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