Leveraging the Health and Retirement Study To Advance Palliative Care Research

Abstract

Background: The critical need to expand and develop the palliative care evidence base was recently highlighted by the Journal of Palliative Medicine's series of articles describing the Research Priorities in Geriatric Palliative Care. The Health and Retirement Study (HRS) is uniquely positioned to address many priority areas of palliative care research. This nationally representative, ongoing, longitudinal study collects detailed survey data every 2 years, including demographics, health and functional characteristics, information on family and caregivers, and personal finances, and also conducts a proxy interview after each subject's death. The HRS can also be linked with Medicare claims data and many other data sources, e.g., U.S. Census, Dartmouth Atlas of Health Care. Setting: While the HRS offers innumerable research opportunities, these data are complex and limitations do exist. Therefore, we assembled an interdisciplinary group of investigators using the HRS for palliative care research to identify the key palliative care research gaps that may be amenable to study within the HRS and the strengths and weaknesses of the HRS for each of these topic areas. Conclusion: In this article we present the work of this group as a potential roadmap for investigators contemplating the use of HRS data for palliative care research.