2 August 2019 – Medicare data collection for medical research purposes

We would like to clarify recent inaccurate reports about how the department uses data collection for medical research purposes.

We play an important role in assisting approved health-related research projects and studies which can demonstrate a net benefit for the Australian community.

The facts are:

  • The Department of Human Services’ Privacy Policy clearly states that we are able to provide aggregated data to researchers and research bodies.
  • We assist in the mail out component of these research projects, provided they meet stringent criteria.
  • All research projects we assist with must receive approval by a Human Research Ethics Committee. The researchers must provide the Department of Human Services with written approval from the relevant ethics committee. The Department of Health must provide approval to proceed before the mail out starts.
  • The information the ethics committee must consider includes the study methodology and how the information will be handled, the survey questions and the purpose and intended use of the responses.
  • We understand that some research projects can be about sensitive subjects. The Human Research Ethics Committees consider six elements of harm under the National Statement on Ethical Conduct in Human Research prior to providing ethics approval.
  • The personal information we hold is protected by the Privacy Act 1988 and the Health Insurance Act 1973 or National Health Act 1953 and can’t be given to a third party without a customer’s consent or where otherwise permitted by law.
  • We send the information out on behalf of third parties – not to third parties – to guarantee that the personal and sensitive health information of our customers is protected.
  • We do not disclose the personal or sensitive health information of our customers to third parties without their consent. This is made clear on our website and in all letters we send.
  • Our mail providers are required to abide by strict physical and cyber security protocols at all times to ensure that the information we hold and use for mail outs is always protected.
  • People don’t have to take part in any research activity if they don’t want to. They may agree to help with one research project and decline another. The decision won’t affect any payment or service they get from us.

If anyone has concerns about getting letters related to medical research they can ask to be excluded from future mail outs. This means they won’t be notified about any studies that could benefit them. They can do this by contacting data.requests@humanservices.gov.au