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To Tell or Not to Tell? Professional and Lay Perspectives on the Disclosure of Personal Health Information in Community-Based Dementia Care*

  • C. Shawn Tracy (a1), Neil Drummond (a2), Lorraine E. Ferris (a3), Judith Globerman (a4), Philip C. Hébert (a1), Dorothy M. Pringle (a3) and Carole A. Cohen (a1)...


Developments in information technology and the ongoing restructuring of health services to increase provision in community settings militate in favour of a streamlining of communications and the exchange of information about patients among health and social care providers. Yet the principles of confidentiality and privacy appear to inhibit this process. In order to explore the practical, ethical, and legal imperatives attendant upon personal health information exchange, we conducted a series of interviews with professional care providers, persons with early-stage dementia, and their family caregivers. The findings indicate some degree of discordance. Professionals reported valuing disclosure both to colleagues and family caregivers on the basis of its being in the patients' best interests. Patients also valued inter-professional exchange, but sought strong control over disclosure to family members. Family caregivers valued being kept informed of the patient's condition, even without the latter's consent. Implications for research and policy are discussed.

Les développements en technologie informatique et la restructuration constante des services de santé en vue d'accroître les services en communauté plaident en faveur d'une amélioration des communications et l'échange d'information personnelle des patients entre les divers fournisseurs de soins sociaux et de la santé. Cependant, les principes de confidentialité et de protection de la vie privée sembleraient empêcher ces processus. Afin d'explorer les obligations pratiques, éthiques et légales qui relèvent des échanges d'information personnelle de santé, nous avons mené une série d'entrevues avec des intervenants en milieu de la santé, des personnes au stage initial de la démence ainsi qu'avec des aidants naturels. Les résultats indiquent qu'un certain niveau de discorde règne parmi les principaux concernés. Les professionnels de la santé indiquent qu'ils approuvent le dévoilement d'information à leurs collègues et aux aidants naturels dans l'intérêt des patients. Les patients reconnaissent les avantages de la divulgation d'information personnelle aux intervenants professionnels, mais ils préféreraient retenir le contrôle du dévoilement aux membres de la famille. Quant aux membres de la famille, ils souhaitent être informés de la condition du patient, et ce, même sans son accord. Le présent travail discute aussi les implications de ces résultats pour la recherche et la formation de nouvelles politiques.


Corresponding author

Requests for offprints should be sent to: / Les demandes de tirés-à-part doivent être adressées à : Dr. Neil Drummond, Department of Family Medicine, UCMC North Hill, 1707, 1632 - 14th Avenue NW, Calgary, AB T2N 1M7. (


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The authors gratefully acknowledge funding for this research from the Alzheimer Society of Canada Research Program. Special thanks to Jackie Cohen, Audrey Goba, Pamela Goldsilver, Shari Gruman, Marilyn Gruneir, Jennie Jones, Mark Weitz, and the professional and lay participants for their assistance with this project.



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