Recommendations to make the best use of current data collection efforts as well as fill important gaps address three broad questions:

  • What could be learned from already existing data?

  • What modifications would improve the usefulness of currently collected data?

  • What new steps should be taken to enhance the accuracy and richness of data collection to better monitor and improve the quality of life and care at the end of life for patients of all ages and their affected families?

Recommendation #1: Support Researchers’ Use of Existing Data Systems

Agencies should promote research that uses existing data resources to describe aspects of the quality of life and quality of care at the end of life, by publicizing their availability and providing funding for analysis.

A great deal of information is recorded, for a variety of purposes, that could describe aspects of quality of life and quality of care at the end of life. It is probably not surprising that Medicare claims and other data collected for purposes other than measuring quality at the end of life are not always used to their fullest for measuring quality, given that their primary purpose is purely administrative. In addition, the full potential value of many surveys and studies of health and well-being in characterizing quality of life and care at the end of life is not realized because data are analyzed only to answer some questions but not others. The reasons for this vary, but include a general lack of funding support for further data analysis, the fact that researchers are unaware of the data resource, and in some cases, the relatively new ability to link data from different sources to facilitate meaningful answers to important questions.

Currently, little support is available to researchers to make use of existing data resources in describing aspects of the quality of life and and the care provided to individuals who are dying. Research-funding agencies should provide support for using existing data resources for this purpose. Some examples of the types of studies that could be conducted with modest funding include:

  • Making use of existing longitudinal surveys to examine the health trajectories of those who die in order to learn more about the role of suffering, disability, and chronic illnesses at the end of life.

  • Studying patterns of costs and utilization in the years before death

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