Why Protect Confidentiality in Health Records? A Review of Research Evidence
Mulligan, Ea, Braunack-Mayer, Annette, Australian Health Review
We present the main arguments for protecting the confidentiality of health services, along with those for limiting confidentiality. These arguments are then substantiated by reference to research evidence.
There is evidence that access to health care is restricted if confidentiality is not promised to some groups of patients. Fear of disclosure does diminish patients' candour, and this can compromise the quality of care.
While patients are concerned about confidentiality and some are harmed by 'leaks' from health services, most people in Australia still trust health providers to keep their secrets, and patients rarely become aware of a breach of confidence.
It has been claimed that strict protection of confidentiality may obstruct the pursuit of medical research and the use of electronic medical records. There is, as yet, no evidence that gaining full benefit from the use of electronic medical records entails reduced protection for confidentiality. The losses to epidemiological research if patient consent were always required are hotly debated.
Confidentiality should be protected because it protects patients from harm, supports access to health care and produces better health outcomes.
Aust Health Rev 2004: 28(1): 48-55
EXISTING BASELINE DATA gives a good basis for monitoring impacts over time as new initiatives such as electronic linkage of medical records are introduced.
The power of information technology to store, link and network information is increasing. Australian governments have responded with the introduction of new legislation, such as amendments to the Commonwealth Privacy Act 1988, the NSW Health Records and Information Privacy Act 2002, the ACT Health Records (Privacy and Access) Act 1997 and the Victorian Health Records Act 2001. Debate has also been rekindled over the value of protecting confidential health information and whether rigorous protection for confidential health information is in the public interest or not (Etzioni 1999; Gostin & Hodge 2000).
We seek to draw attention to empirical research evidence concerning the value of confidentiality in health. Opening with a restatement of arguments for maintaining the confidentiality of health information (and arguments for limiting it) we will present the available research evidence. The claim that confidentiality in health services is valuable can be substantiated by a review of these arguments in the light of research evidence.
A central ethical argument for preserving the confidentiality of health information is that it demonstrates respect for the autonomy of the patient. Practitioners demonstrate respect for patients' autonomy when they acknowledge that patients have the right to make decisions about themselves and their lives. That right includes a right to choose who will be privy to their secrets.
Confidentiality confers a number of practical benefits. It shields patients from harm which might flow from disclosure of health information. It encourages patients to be candid with their health care providers. For people who avoid medical care without a guarantee of confidentiality, it is a prerequisite for access.
The obligation to maintain confidentiality is not absolute. There are competing public interests which justify disclosure in some circumstances. The most powerful arguments in favour of breaching confidentiality turn on the need to prevent harm to others. Disclosures which may prevent child abuse or homicide are salient examples.
Other social benefits are derived from the free flow of information. The offer of confidentiality necessarily restricts information transfers and may work against the public benefit from using information more efficiently through electronic networking. In population research, having to obtain individual consent from patients for record linkage may compromise large epidemiological studies which rely on a high recruitment rate in a defined population to maintain their statistical validity. …