Call for privacy must be balanced with your health carer’s need to know
MANY people approach the privacy of their health information in the same way they approach works of art. They might not know much about it, but they do know what they like — and what they don’t.
Like tastes in art, decisions about sharing health information with others are very individual. Some people happily post pictures of their X-rays and test results on their blogs and tell health care providers every detail of their medical histories. Other people do not want even their close friends and family to know about their health problems.
Privacy concerns differ from situation to situation. Someone might be happy to share information about use of anti-depressants with a GP, but not their podiatrist. This is a challenge for policy makers and legislators, who seek a general framework for privacy of health information that gives consumers the protection they want and also ensures information can be accessed when required for the provision of health care.
Currently our privacy system looks a bit like a camel, and is difficult for both consumers and providers of health care to understand. Health privacy issues are governed by both commonwealth and (in some cases) state/ territory legislation or regulations, and can vary depending on whether the information is used in a public or a private health service.
This makes little sense to consumers moving from one part of the health system to another, for example from a public hospital to a private aged-care facility.
Improving the way we deal with privacy of health information is becoming increasingly important due to emerging trends in care, such as increasing rates of chronic diseases.
People with chronic diseases typically require health care from a range of different health professionals over extended periods of time. This means that their health information has to be available in different settings, at different times and able to be accessed by different care providers.
Another major change is the increasing use of new technologies, which create new opportunities for sharing and transferring information, such as electronic health records, and electronic scripts and discharge summaries. These can have significant benefits for consumers but increase the potential for health information to be shared without consumers’ knowledge or control.
Another issue is that it can be difficult to anticipate and plan for the circumstances in which access to health information is required. In an emergency information may be required immediately, even if the person is not able to provide informed consent.
Health information can also have consequences beyond the individual. Taking a family medical history involves collecting information about family members often without their knowledge. Information relating to genetic testing can have relevance for people who do not yet exist — for example, future children.
Addressing issues such as these is a challenge for any regulatory system. The Australian Law Reform Commission (ALRC) recently released a lengthy discussion paper on privacy laws discussing the specific application of these laws to health information.
The Consumers’ Health Forum welcomes the discussion paper and supports many of its proposals. In particular, we support the need for national consistency in the approach to privacy of health information. This is better for both consumers and providers, and will result in lower compliance costs overall.
We strongly urge governments to closely involve consumers in the development of a national system of regulation or legislation governing health privacy.
Changes to the existing system need to respond to the diverse needs of consumers in relation to health information, and should work for all consumers. This includes people with complex health care needs who may want different aspects of their health status and medical histories made available to various care providers.Consumers place a high degree of trust in their health care providers and trust that information about their health will be used appropriately. Using health information without the knowledge or consent of consumers is a breach of this trust.
What exactly constitutes the ‘‘ appropriate use’’ of health information is a complex issue, and one which requires an ongoing conversation between the community, health professionals and researchers. Helen Hopkins is executive director of the Consumers’ Health Forum of Australia