The framework to guide the secondary use of data in My Health Record system was developed in collaboration with consumers, clinicians, medical researchers, industry experts, privacy advocates and the Office of the Australian Information Commissioner. Applications will be processed by the Ethics Committee of the Australian Institute of Health and Welfare (AIHW) in conjunction with the MHR Secondary Use of Data Governance board, which is made up of the Australian Digital Health Agency and a range of independent experts.
My Health Record Holders Can Opt-Out
My Health Record holders will automatically be signed up to have their de-identified data shared. Following concerns that data may be available for commercial use, accessed by insurance assessors, or to determine eligibility for welfare benefits, the plan allows for MHR holders to withdraw participation. Users will also be able to restrict access to certain data by third parties. Insurance companies will not be allowed to access individual health records, although wider use – including the provision of data to insurance agencies – may be allowed when the framework is reviewed two years after the initial dataset release.
The government states that the data will be subject to strong legislation to prevent unauthorised use. Data will not be released overseas and will only be released to international organisations under certain conditions, such as collaborative projects with Australian entities or to generate public health benefits for Australians. For the most part, data released will be de-identified so as not to breach an individual’s privacy or cause harm. Identifiable data may be released in some circumstances but it is expected there will be a consent process involved.
Despite the concerns about the data use being used for purposes other than directly health related, including direct marketing, the Consumers Health Forum see My Health Record as a positive step in encouraging consumers to become active partners in their health care. However there have been submissions under the public consultation process for the framework that the system be opt-in rather than opt-out.
Australian consumers are being encourage to speak with their primary healthcare provider about their My Health Record.