Abstract

This study compares the perspectives of professionals, persons with early-stage dementia and their family caregivers regarding the exchange of personal health information (PHI). Professionals value disclosure to colleagues and family caregivers on the basis of patients' best interests. Patients value inter-professional exchange, but sought strong control over disclosure to family members. Family caregivers value disclosure regardless of patients' consent. Such differing perspectives have implications for the practical, ethical and legal imperatives guiding PHI exchange. Background: Increasingly, Canadians with dementia are receiving health care in the community. Exchange of personal health information (PHI) (for example, laboratory test results) among professionals and non-professionals is fundamental to successful community care. Tensions exist between providers' requirements to share the PHI of patients, and patients' rights to privacy and autonomy. This study compares and contrasts the perspectives of professionals and non-professionals (patients and family members) concerning the exchange of PHI.

Methods: In 2001, focus groups were conducted to compare and contrast views on the exchange of PHI amongst twenty seven professional care providers, seven persons with early-stage dementia, and five of their five family caregivers. Professional providers were asked to address issues relating to 'best practices' for information exchange, and to respond to case vignettes portraying hypothetical case histories for typical community care recipients and legal issues pertaining to information exchange. Persons with dementia and their caregivers were asked about their experiences with and opinions on the provision of community care, and issues of health privacy and PHI exchange.

Findings: Respondents differentiated between disclosure of PHI among professionals, and between professionals and non-professionals, mainly family caregivers. With respect to inter-professional disclosure, professionals were concerned with the lack of clear rules and professional self-protection, and spoke of 'bending the rules' depending on care recipient risk and benefit. Patients were in favour of extensive inter-professional exchange and appeared largely untroubled by legal and ethical issues. Caregivers were similarly untroubled but restricted disclosure to focused information. With respect to disclosure of PHI to non-professionals, professionals supported the significant role of family caregivers but expressed concerns regarding family dynamics, the lack of clear rules, and suggested the level of benefit to the client should determine disclosure. Patients indicated strong desire to maintain control of professionals' decisions to disclose information to family, and were concerned about 'becoming a burden' to their children; and caregivers preferred that professionals determined disclosure due to concerns of patient competency.

Conclusions: There are differences between 'expert' and 'lay' perspectives on the exchange of PHI. Professionals value disclosure of information to colleagues and family caregivers on the basis of patients' best interests, while patients value inter-professional exchange of PHI, but seek strong control over disclosure to family members, and family caregivers value disclosure regardless of patients' consent.

Reference: Tracy, C.S., N. Drummond, L.E. Ferris, J. Globerman, P.C. Hebert, D.M. Pringle and C.A. Cohen, "To tell or not to tell? Professional and lay perspectives on the disclosure of personal health information in community-based dementia care", Canadian Journal on Aging, 2004; 23(3), 203-215.