Describing Death in America What We Need to Know: Executive Summary (2003) / Chapter Skim
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4. Methodological Issues in the Collection and Use of Data About Dying
4. Methodological Issues in the Collection and Use of Data About Dying
Pages 53-62
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From page 53... ...
obtaining information from the perspectives of the person dying, the person's loved ones, and health providers; (2) coping 53
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From page 54... ...
Information about quality of life and quality of care at the end of life is important to clinicians and to researchers, to individuals and organizations interested in internal quality improvement efforts, and to agencies concerned with external inspections. As this field of inquiry grows and develops, there will be variations in the precision of the data collection and in acceptable standards for reliability and validity.
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From page 55... ...
METHODOLOGICAL ISSUES RELATED TO THE USE OF EXISTING DATASETS There are several methodological issues associated with the use of large datasets created for purposes other than end-of-life research. These generally stem from the methods and sampling strategies used to collect the data for these datasets.
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From page 56... ...
Pooling data from multiple institutions, however, requires careful consideration of the original sampling strategies and timing of data collection. METHODOLOGICAL ISSUES RELATED TO SURVEY METHODS Several aspects of survey methods are particularly troublesome for the purpose of studying individuals who are elderly or sick enough to die.
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From page 57... ...
· Use of proxy respondents. The use of proxy respondents warrants special attention because of the critical role they play in collecting information about people who are cognitively impaired or too sick to be studied directly, because proxy respondents represent the key source of information after a death has occurred.
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From page 58... ...
ANALYTIC ISSUES IN USING DATA FROM IDENTIFIED DECEDENTS arise: When using data from identified decedents, important analytic issues · Approaches to handling incomplete data. Handling incomplete data is challenging because variables are likely to be missing for specific reasons, and their absence may bias overall results.
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From page 59... ...
Multiple HHS data collection efforts are now linked analytically through the use of common core questionnaires, common sampling frames, and common definitions and terms. This results In an overall reduction in the burden imposed on survey respondents, increases the efficiencies of data collection, and vastly improves the analytic capabilities of HHS surveys (HHS, 1995~.
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From page 60... ...
Some linkages require data sharing between agencies, and when this occurs, certain laws and policies concerning disclosure and consent are relevant. Notably, the Privacy Act generally requires consent for disclosure from one agency to another, but there are exceptions.
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From page 61... ...
The act contains 12 categories of exceptions to the consent requirement, intended to accommodate legitimate needs for identifiable information, such as conducting research and statistical activities that involve record linkage. In addition, there are certain federal regulations, most notably the Federal Policy for the Protection of Human Subjects, known as the Common Rule, that govern certain research projects that involve human subjects or personal information on them; these projects may include record linkage.
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From page 62... ...
The basic physical and electronic security approaches that are used to protect any data stored electronically also are relevant for information resulting from record linkage. These include access controls, audit trails, and storage strategies.
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