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Cited by 196Ethics in Clinical ResearchEthics and bioethics in healthcareThoreau and American Literature

Patients, privacy and trust: Patients’ willingness to allow researchers to access their medical records

Damschroder, Laura J., Pritts, Joy L., Neblo, Michael A., Kalarickal, Rosemarie J., Creswell, John W., Hayward, Rodney A.·2007·Social Science & Medicine
DOI 10.1016/j.socscimed.2006.08.045
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Abstract

The federal Privacy Rule, implemented in the United States in 2003, as part of the Health Insurance Portability and Accountability Act of 1996 (HIPAA), created new restrictions on the release of medical information for research. Many believe that its restrictions have fallen disproportionately on researchers prompting some to call for changes to the Rule. Here we ask what patients think about researchers' access to medical records, and what influences these opinions. A sample of 217 patients from 4 Veteran Affairs (VA) facilities deliberated in small groups at each location with the opportunity to question experts and inform themselves about privacy issues related to medical records research. After extensive deliberation, these patients were united in their inclination to share their medical records for research. Yet they were also united in their recommendations to institute procedures that would give them more control over whether and how their medical records are used for research. We integrated qualitative and quantitative results to derive a better understanding of this apparent paradox. Our findings can best be presented as answers to questions related to five dimensions of trust: Patients' trust in VA researchers was the most powerful determinant of the kind of control they want over their medical records. More specifically, those who had lower trust in VA researchers were more likely to recommend a more stringent process for obtaining individual consent. Insights on the critical role of trust suggest actions that researchers and others can take to more fully engage patients in research.

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Crossref · 10.1016/j.socscimed.2006.08.045

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  • Saturation cannot be an independent measure of coding quality because it is a direct and automatic consequence of one's coding decisions.

    “it has been claimed to demonstrate the trustworthiness of coding (Damschroder et al. 2007)—but as saturation will be a direct and automatic consequence of one’s coding decisions, it is not clear how it can be an independent measure of their quality.”

    From Saturation in qualitative research: exploring its conceptualization and operationalization (2018) · cites this paper as Damschroder et al. 2007

  • The literature has often suggested consent may be a requirement for public acceptability, whilst simultaneously arguing that requirements for consent present obstacles to effective and necessary health research and/or surveillance.

    “The literature has often suggested consent may be a requirement for public acceptability, whilst simultaneously arguing that requirements for consent present obstacles to effective and necessary health research and/or surveillance [29, 30, 35].”

    From Public responses to the sharing and linkage of health data for research purposes: a systematic review and thematic synthesis of qualitative studies (2016) · cites this paper as [35]

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Authors
Damschroder, L. J., Pritts, J. L., Neblo, M. A., Kalarickal, R. J., Creswell, J. W., & Hayward, R. A.
Affiliations
  • University of Michigan (US)
  • Georgetown University (US)
  • The Ohio State University (US)
  • University of Nebraska–Lincoln (US)
  • Health Services Research & Development (US)
Corresponding author
Damschroder, Laura J.
ORCID
Venue
Social Science & Medicine
Publisher
Elsevier BV
Published
2007-01
Volume
64
Issue
1
Pages
223-235
ISSN
0277-9536 (ISSN-L)
DOI
10.1016/j.socscimed.2006.08.045
OpenAlex
W1999009641
Cited by
196
References
31
Citations by year
2026: 2 · 2025: 11 · 2024: 7 · 2023: 10 · 2022: 12 · 2021: 14 · 2020: 26 · 2019: 11 · 2018: 5 · 2017: 11 · 2016: 13 · 2015: 12 · 2014: 8 · 2013: 12 · 2012: 9
FWCI
6.66
Type
journal article
Language
en
Open access
closed
Licence
www.elsevier.com/tdm/userlicense/1.0/ (tdm)
Locations
  • Social Science & Medicine (publishedVersion)
  • PubMed (publishedVersion)
  • RePEc: Research Papers in Economics (submittedVersion)
  • DigitalGeorgetown (Georgetown University Library) (submittedVersion)
Funders
National Institutes of Health
Topics
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics in Clinical Research
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics and bioethics in healthcare
  • Physical Sciences › Computer Science › Information Systems › Thoreau and American Literature
Keywords
patient trust, medical records privacy, HIPAA Privacy Rule, informed consent, Veterans Affairs health care, patient involvement in research, data security
MeSH terms
Aged, Confidentiality, Female, Humans, Male, Medical Records, Middle Aged, Patients, Surveys and Questionnaires, United States, Ethics, Research, Government Regulation, Trust

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