Hostname: page-component-848d4c4894-4hhp2 Total loading time: 0 Render date: 2024-05-19T09:48:44.279Z Has data issue: false hasContentIssue false
  • English
  • Français

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

Published online by Cambridge University Press:  31 March 2010

C. Shawn Tracy ,
Neil Drummond ,
Lorraine E. Ferris ,
Judith Globerman ,
Philip C. Hébert ,
Dorothy M. Pringle  and
Carole A. Cohen
C. Shawn Tracy
Affiliation:
Sunnybrook and Women's College Health Sciences Centre
Neil Drummond*
Affiliation:
University of Calgary
Lorraine E. Ferris
Affiliation:
University of Toronto
Judith Globerman
Affiliation:
University of British Columbia
Philip C. Hébert
Affiliation:
Sunnybrook and Women's College Health Sciences Centre
Dorothy M. Pringle
Affiliation:
University of Toronto
Carole A. Cohen
Affiliation:
Sunnybrook and Women's College Health Sciences Centre
*
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. (ndrummon@ucalgary.ca)
Get access Rights & Permissions [Opens in a new window]

Abstract

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.

Résumé

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.

Keywords

aginginformation exchangeAlzheimer's diseasedementiaethicspersonal health informationdisclosurevieillissementéchange de renseignementsmaladie d'Alzheimerdémencedéontologierenseignements personnels sur la santédivulgation
Type
Articles
Information
Canadian Journal on Aging / La Revue canadienne du vieillissement , Volume 23 , Issue 3 , Fall/Automne 2004 , pp. 203 - 215
Copyright
Copyright © Canadian Association on Gerontology 2004

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

Footnotes

*

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.

References

Abraham, I.L., Holyroyd, S., Snustad, D.G., Manning, C.A., Brashear, H.R., Diamond, P.T., & Thomson-Heisterman, A.A. (1994). Multidisciplinary assessment of patients with Alzheimer's disease. The Nursing Clinics of North America, 29(1), 113–128.Google Scholar
Abraham, I.L., Onega, L.L., Chalifoux, Z.L., & Maes, M.J. (1994). Care environments for patients with Alzheimer's disease. The Nursing Clinics of North America, 29(1), 157–172.CrossRefGoogle ScholarPubMed
Alzheimer Society of Canada. (2003). Tough issues: Ethical guidelines (Rev. ed.). Toronto: Alzheimer Society of Canada.Google Scholar
Balaban, D. (1998). Strategies for clinics: How integrated delivery systems are applying automation at their group practices. Health Data Management, 6, 52–58.Google ScholarPubMed
Bruce, D.G., & Paterson, A. (2000). Barriers to community support for the dementia carer: A qualitative study. International Journal of Geriatric Psychiatry, 15, 451–457.Google Scholar
Cameron, S., Regalado, M., Quitoles, M., & Ordonez, L. (1999). Harnessing technology: The creation of an electronic care management record in a Social Health Maintenance Organisation. Managed Care Quarterly, 7, 11–15.Google Scholar
Canadian Medical Association. (1999). Canadians highly value the privacy and confidentiality of their health information. Retrieved 10 July 2000 from http://www.cma.ca/cma/common/displayPage.do?pageId=/staticContent/HTML/N0/12/advocacy/news/1999/11-29.htm.Google Scholar
Canadian Study of Health and Aging Working Group. (1994). Canadian study of health and aging: Study methods and prevalence of dementia. Canadian Medical Association Journal, 150, 899–913.Google Scholar
Carman, D., & Britten, N. (1995). Confidentiality of medical records: The patient's perspective. British Journal of General Practice, 45(398), 485–488.Google ScholarPubMed
Cohen, C.A., Whitehouse, P.J., Post, S.G., Gauthier, S., Eberhardt, A., & LeDuc, L. (1999). Ethical issues in Alzheimer disease: The experience of a National Alzheimer Society task force. Alzheimer Disease and Associated Disorders, 13, 66–70.Google Scholar
Cotrell, V., & Schulz, R. (1993). The perspective of the patient with Alzheimer's disease: A neglected dimension of dementia research. The Gerontologist, 33(2), 205–211.CrossRefGoogle ScholarPubMed
Dhir, K.S., & Aggarwal, S.S. (1998). Confidentiality of electronic medical records in the managed care environment. Journal of Health and Human Services Administration, 21, 80–91.Google ScholarPubMed
Donaldson, C. (2001). Eliciting patients' values by use of “willingness to pay”: Letting the theory drive the method. Health Expectations, 4(3), 180–188.CrossRefGoogle ScholarPubMed
France, F.H.R. (1996). Control and use of health information: A doctor's perspective. International Journal of Bio-Medical Computing, 43, 19–25.Google Scholar
Glaser, B., & Strauss, A. (1967). The discovery of grounded theory. Chicago, IL: Aldine.Google Scholar
Jurkowski, C.L. (1998). A multidisciplinary approach to Alzheimer's disease: Who should be members of the team? American Journal of Medicine, 104(4A), 13S–16S.Google Scholar
Kane, M.N. (2001). Legal guardianship and other alternatives in the care of elders with Alzheimer's disease. American Journal of Alzheimer's Disease and Other Dementias, 16(2), 89–96.CrossRefGoogle ScholarPubMed
Klop, R., van Wijmen, F.C.B., & Philipsen, H. (1991). Patients' rights and the admission and discharge process. Journal of Advanced Nursing, 16, 408–12.CrossRefGoogle ScholarPubMed
Lee, R.G., & Garvin, T. (2003). Moving from information transfer to information exchange in health and health care. Social Science and Medicine, 56, 449–464.CrossRefGoogle ScholarPubMed
Mullen, M.A., & Lavery, J. (1998). Ethical and legal issues in electronic health information systems: Report of the University of Toronto Joint Centre for Bioethics working group. Retrieved 5 January 2002 from http://www.utoronto.ca/jcb/Resources/health_information.htm.Google Scholar
Ontario Ministry of Health and Long-Term Care. (1999). Ontario's strategy for Alzheimer Disease and related dementias. Toronto: Queen's Printer for Ontario.Google Scholar
Post, S.G., & Whitehouse, P.J. (1995). Fairhill guidelines on ethics of the care of people with Alzheimer's disease: A clinical summary. Journal of the American Geriatrics Society, 43, 1423–1429.CrossRefGoogle ScholarPubMed
Regan, B.G. (1991). Computerised information exchange in health care. Medical Journal of Australia, 154, 140–144.CrossRefGoogle ScholarPubMed
Romanow, R.J. (2002). Building on values: The future of health care in Canada—Final report. Commission on the Future of Health Care in Canada. Ottawa: National Library of Canada.Google Scholar
Royal Pharmaceutical Society of Great Britain. (1997). From compliance to concordance: Achieving shared goals in medicine taking. London: Author. Retrieved 18 November 2001 from http://www.concordance.org.Google Scholar
Ryan, M., McIntosh, E., & Shackley, P. (1998). Using conjoint analysis to elicit the views of health service users: An application to the patient health card. Health Expectations, 1(2), 117–129.CrossRefGoogle Scholar
Saskatchewan Health. (1997). Consultation paper on protection of personal health information. Regina, SK: Government of Saskatchewan. Retrieved 8 August 2000 from http://www.health.gov.sk.ca/ph_br_health_leg_phiq/default.htm.Google Scholar
Steven, K., Morrison, J., & Drummond, N. (2002). Lay versus professional motivation for asthma treatment: A cross-sectional, qualitative study in a single Glasgow general practice. Family Practice, 19, 167–171.CrossRefGoogle Scholar
Strauss, A., & Corbin, J. (1990). Basics of qualitative research: Grounded theory procedures and techniques. Newbury Park, CA: Sage.Google Scholar
Toseland, R.W., McCallion, P., Gerber, T., Dawson, C., Gieryic, S., & Guilamo-Ramos, V. (1999). Use of health and human services by community-residing people with dementia. Social Work, 44(6), 535–548.CrossRefGoogle ScholarPubMed
United Kingdom, Department of Health. (2001). The expert patient: A new approach to chronic disease management for the 21st century. London: Department of Health. Retrieved 2 November 2001 from http://www.doh.gov.uk/healthinequalities/ep_report.pdf.Google Scholar
Weitz, M., Drummond, N., Pringle, D., Ferris, L.E., Globerman, J., Hébert, P., Tracy, C.S., & Cohen, C. (2003). In whose interest? Current issues in communicating personal health information: A Canadian perspective. Journal of Law, Medicine and Ethics, 31(2), 292–301.CrossRefGoogle ScholarPubMed