Describing Death in America What We Need to Know: Executive Summary (2003) / Chapter Skim
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5. Conclusions and Recommendations
5. Conclusions and Recommendations
Pages 63-67
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From page 63... ...
No single type of data collection will provide the full range of information needed to comprehensively describe the quality of life and quality of care at the end of life. And the broad sweeps that are the focus of this report should be associated with small focused studies to better understand patterns such as geographic variation that can be detected at the national level, but only understood at the local level.
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From page 64... ...
· 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.
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From page 65... ...
Specific recommendations for training of researchers are as follows: · Government agencies that sponsor data collection should sponsor a series of training initiatives to open dialogues among researchers and health care workers to increase the reliability and validity of ongoing data collections. These should emphasize: · Training professionals in various disciplines in the use of data sources.
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From page 66... ...
Incremental Changes to Ongoing Data Collection Efforts The information content for studying end-of-life issues can be enhanced in specific surveys by relatively minor changes. The following improvements, modifications, or supplements to ongoing data collection efforts would be relatively inexpensive ways to build upon existing efforts: · Sponsors of longitudinal health surveys should insist on the routine use of "exit" surveys to capture information from the next-of-kin of participants who die between survey rounds.
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From page 67... ...
, a Congressionally-mandated organization that advises CMS on the Medicare system. Ongoing efforts should be directed towards facilitating links among key types of data collection, especially between surveys and health care utilization records.
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