MEDIA RELEASE: Every 3 minutes Australian health services collect 400 data points of up to 25m patients’ medical records

Primary Health Networks (PHNs) have been collecting 400 data points of up to 25 million Australian patient health records since August 2019. The records are apparently deidentified, but as science has long demonstrated, can be later identified so that criminal agents may collect 400 pieces of information about you from this information.

Your General Practice asks for your consent to do this by bundling the authority into imprecise packages of tick-box styled general statements. By consenting to be treated by your usual doctor, patients also consent to link information from their confidential medical consult to information stored by health authorities (see Figure 1, below).

Juanita Fernando, Chair of the Australian Privacy Foundation (APF) Health Committee was “…annoyed to discover the consent mechanism. I [sic] didn’t realise I [sic] was sharing all that private and sensitive health information with my doctor, PHNs and the government to store”.

Patients lose control over the way their data is used as it flows from health authorities to researchers in a cascade from one study to the next.

The APF has traced the uncontrolled consent mechanism to the Australian Institute of Health and Welfare (AIHW), who evidence suggests are designated by the Federal Government as our National Data Custodian. Sadly, when we reached out to the AIHW to ask some questions, we were referred to the Department of Health for answers. Fernando continues, “Around and around we go, pinging backwards and forwards between and betwixt government departments and health authorities for answers, but our questions remain”.

Our key questions ask –
  1. How can people withdraw or refuse consent for the PHN data collection?
  2. Who or what are the positions and bodies that hold the data collected by the PHNs?
So we request that federal health authorities and PHNs to share their data collection plans with Australians and advise how people may withdraw or refuse consent.

References:
  1. Sugarman, J. & Carrithers, J.(2021) Certificates of confidentiality and unexpected complications for pragmatic clinical trials. Learn Health Sys; 5(2). Available from https://onlinelibrary.wiley.com/doi/10.1002/lrh2.102382https://doi.org/10.1002/lrh2.102382.
  2. Fernando, J. (2021) Federal Government quietly reward GPs for patient health data without getting informed consent, March. Australian Privacy Foundation. Available from https://privacy.org.au/wp-content/uploads/2021/04/MB-GovtGPsPatientData-210401.pdf
Media Contacts for Australian Privacy Foundation board members:

Juanita Fernando, Health Committee

0408 131 535juanita.fernando@privacy.org.au
Media Backgrounder: Federal Government quietly reward GPs for patient health data without getting informed consent

Press Release in PDF format