- The ‘big data revolution’ in healthcare has increased the demand for access to identifying health information without consent.
- In May 2015, the government released the Electronic Health Records and Healthcare Identifiers: Legislation Discussion Paper.
- Currently, the Personally Controlled Electronic Health Record (PCEHR) system is an opt-in system. The proposal is to trial an opt-out system. If this system is approved, every Australian with a Medicare number will have an electronic health record unless they opt out. The data revolution and the PCEHR discussion paper raise contemporary issues for discussion regarding privacy and health information.
Health information can reflect a person’s medical condition (including HIV status), mental health, lifestyle, sexual preference, personal history (in terms of sexual or other abuse), family and beliefs. This information can be valuable not only in terms of clinical care but also in relation to medical research, population planning, genetic profiling, personalised medicine, workers compensation, insurance profiles and, in cases dealing with paternity, custody and other disputes.
In the Australian Privacy Commissioner’s Pound Road Medical Centre – Own motion investigation reportof July 2014, the Commissioner states at page 5 that: ‘[the] Privacy Act affords sensitive information, such as health information, a higher level of privacy protection than other personal information. This is because inappropriate handling of sensitive information can have particular impacts on the individuals concerned. For example, some kinds of sensitive information, such as health information which identifies an individual’s medical condition (a) may provide the basis for discrimination or other forms of harm; and (b) mishandling of this information may lead to humiliation or embarrassment, or undermine an individual’s dignity.’