Negotiating stigma in health care: disclosure and the role of electronic health records

Abstract

The implementation of electronic health records facilitates information sharing which can create challenges for stigma management and disclosure during the clinical encounter. Building on theories of stigma management, we analysed 30 in-depth interviews of sexual minority men in the USA to explore how they perceived the role of electronic health records in the clinical encounter in general and for disclosure in particular. Participants expressed concerns about privacy but also saw potential benefits to electronic health records. Similarly, while some thought electronic health records improved communication with providers, others experienced the electronic health record as a barrier to open and trusting communication. New information technologies are changing health-care encounters, but present a double-edged sword that underscores the challenge of negotiating health care for stigmatised individuals. It remains to be seen if information technology will enhance care for all or further alienate already apprehensive health seekers from disclosing personal health information.

Keywords:

• disclosure
• sexual minority men
• health information technology
• privacy
• stigma
• clinical encounters

Acknowledgements

We appreciate the helpful comments and suggestions from Celeste Campos-Castillo, Jason Houle, Valerie Lewis, Kathryn Lively, Helen Nissenbaum, Emily Walton, and anonymous reviewers of this manuscript. We also acknowledge the support of New York University's Information Law Institute and the resources and helpful discussions of NYU's Center for Health, Identity, Behavior and Prevention Studies, especially Perry Halkitis and Daniel Siconolfi.

Additional information

Funding

This work was supported by the Department of Health and Human Services Office of the National Coordinator for Health Information Technology [grant number HHS 90TR0003/01] and the National Science Foundation [grant number NSF-CNS-0910842]. Neither funding agency had any role in the study design, management, analysis, interpretation, or approval. The contents are solely the responsibility of the authors and do not necessarily represent the official views of the Department of Health and Human Services Office or the National Science Foundation.