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

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  • Damschroder, Laura J.
  • Pritts, Joy L.
  • Neblo, Michael A.
  • Kalarickal, Rosemarie J.
  • Creswell, John W.
  • Hayward, Rodney A.

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: (1) Are medical records kept confidential? (2) Does the research being conducted demonstrate high priority on patient welfare? (3) Are researchers held accountable and responsible for protecting privacy? (4) Are systems to protect medical records sufficiently secure? (5) Do researchers fully disclose the research being conducted and how medical records are used to conduct that research? 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.

Suggested Citation

  • Damschroder, Laura J. & Pritts, Joy L. & Neblo, Michael A. & Kalarickal, Rosemarie J. & Creswell, John W. & Hayward, Rodney A., 2007. "Patients, privacy and trust: Patients' willingness to allow researchers to access their medical records," Social Science & Medicine, Elsevier, vol. 64(1), pages 223-235, January.
    • Handle: RePEc:eee:socmed:v:64:y:2007:i:1:p:223-235
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    References listed on IDEAS

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    1. Lenaghan, Jo, 1999. "Involving the public in rationing decisions. The experience of citizens juries," Health Policy, Elsevier, vol. 49(1-2), pages 45-61, September.
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    1. De Vries, Raymond & Stanczyk, Aimee & Wall, Ian F. & Uhlmann, Rebecca & Damschroder, Laura J. & Kim, Scott Y., 2010. "Assessing the quality of democratic deliberation: A case study of public deliberation on the ethics of surrogate consent for research," Social Science & Medicine, Elsevier, vol. 70(12), pages 1896-1903, June.
    2. Stephanie R. Morain & Danielle M. Whicher & Nancy E. Kass & Ruth R. Faden, 2017. "Deliberative Engagement Methods for Patient-Centered Outcomes Research," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 10(5), pages 545-552, October.
    3. Menegaki, Angeliki, N. & Olsen, Søren Bøye & Tsagarakis, Konstantinos P., 2016. "Towards a common standard – A reporting checklist for web-based stated preference valuation surveys and a critique for mode surveys," Journal of choice modelling, Elsevier, vol. 18(C), pages 18-50.
    4. Essén, Anna, 2008. "The two facets of electronic care surveillance: An exploration of the views of older people who live with monitoring devices," Social Science & Medicine, Elsevier, vol. 67(1), pages 128-136, July.
    5. Benjamin Saunders & Julius Sim & Tom Kingstone & Shula Baker & Jackie Waterfield & Bernadette Bartlam & Heather Burroughs & Clare Jinks, 2018. "Saturation in qualitative research: exploring its conceptualization and operationalization," Quality & Quantity: International Journal of Methodology, Springer, vol. 52(4), pages 1893-1907, July.
    6. Cherif, Emna & Bezaz, Nora & Mzoughi, Manel, 2021. "Do personal health concerns and trust in healthcare providers mitigate privacy concerns? Effects on patients’ intention to share personal health data on electronic health records," Social Science & Medicine, Elsevier, vol. 283(C).
    7. Aleksandar Radic & Rob Law & Michael Lück & Haesang Kang & Antonio Ariza-Montes & Juan M. Arjona-Fuentes & Heesup Han, 2020. "Apocalypse Now or Overreaction to Coronavirus: The Global Cruise Tourism Industry Crisis," Sustainability, MDPI, vol. 12(17), pages 1-19, August.
    8. M. Grace Trinidad & Jodyn Platt & Sharon L. R. Kardia, 2020. "The public’s comfort with sharing health data with third-party commercial companies," Palgrave Communications, Palgrave Macmillan, vol. 7(1), pages 1-10, December.
    9. Michela Chessa & Patrick Loiseau, 2017. "Enhancing Voluntary Contribution in a Public Goods Economy via a Minimum Individual Contribution Level," GREDEG Working Papers 2017-24, Groupe de REcherche en Droit, Economie, Gestion (GREDEG CNRS), Université Côte d'Azur, France, revised Feb 2023.

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