The National Palliative Care Research Center

Curing suffering through palliative care research.

NPCRC Sponsored Conferences

Research in Advanced Dementia:

coming soon....

Health and Retirement Study to Advance Palliative Care

Health and Retirement Study to Advance Palliative Care Research

The NPCRC supported a one day conference entitled, “Leveraging the Health and Retirement Study to Advance Palliative Care Research.” The Health and Retirement Study (HRS) is uniquely positioned to address many areas of palliative care research. Funded by NIA and collecting data since 1992, HRS is an ongoing longitudinal study designed to be representative of the U.S. population overage 50 years. HRS conducts biennial waves of core interviews with approximately20,000 participants and, following a participant’s death, conducts a post-death interview with a knowledgeable proxy,usually a surviving spouse or family member. Together,the core and post-death interviews include detailed survey data including demographics, health and functional characteristics, information on family and caregivers, and personal finances. The longitudinal design also frequently captures the onset and trajectory of serious illness.  The HRS can be linked with Medicare claims data and many other data sources, e.g., U.S. census, Dartmouth Atlas, etc.  The Medicare linkage, in particular, provides an exceptional opportunity to pursue policy-relevant research questions that are central to the expansion and improvement of palliative care in the U.S.

These data offer extraordinary opportunities for addressing many of palliative care’s most pressing and challenging research questions. However, the data are complex and conducting high quality research with this data set requires both substantial knowledge of the HRS and methodological skill. Researchers using the HRS for palliative care research are interdisciplinary and encompass many diverse and complimentary areas of expertise; yet they are geographically dispersed and challenges exist to research collaborations that could otherwise be synergistic.