Engaging Consumers in their Health Data Journey Report

Australians want ownership and control of their own health data and want to be asked for consent when their data is used by either government, private companies or researchers. This stand-out finding was revealed in the Engaging Consumers in their Health Data Journey Report  jointly published by Consumers Health Forum and NPS MedicineWise.
 The comprehensive report was generated through qualitative interviews, literature reviews, a round table discussion with key stakeholders and consumer representatives, and a nationally representative survey of 1,013 Australians.
 Survey results gave the clearest indication that Australians want control over their health data with 96% of Australians believing they should have access to their own health data and 90% of respondents agreeing they should be asked for permission if either a government department or a private organisation wants to use the data.

Consumers Health Forum of Australia and NPS MedicineWise. Engaging consumers in their health data journey. Canberra: CHF and NPS MedicineWise, 2018