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

Abstract

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. A B S T R A C TDevelopments 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.

Information issues for providers of services to people with dementia living in the community in Australia: breaking the cycle of frustration

“…Privacy issues were relevant to our participants’ proposals; however, participants did not raise major privacy concerns. This corresponds largely with a study by Tracy et al . (2004) who found that patients, family carers and a range of professional practitioners involved in community‐based dementia care in Canada strongly supported interprofessional disclosure of personal health information.…”

Families’ and Professional Caregivers’ Views of Using Advanced Technology to Track People With Dementia

“…For example, in a research study on the disclosure of personal health information in community-based dementia care, family caregivers valued being kept informed of the patient's condition even without the latter's consent. In contrast, professionals valued disclosure on the basis of its being in the patients' best interests (Tracy et al, 2004).…”

老龄化社会中的地方和非正式照护①——地理老年学最新研究进展

“…This is particularly important in relation to communication and the exchange of information about the care-recipient among health and social care providers and informal carers. On the one hand, research reveals that health professionals valued disclosure of information to both colleagues and informal carersjustified as being in the patients' best interests -even if disclosure came without the latter's consent (Tracy et al, 2004). Yet this is not without its problems.…”