Consumer health data – clinical and socio-demographic – is increasingly collected, linked and used, both with and without consumers’ knowledge and informed consent. There is increasing focus on ‘big data’, evidence-informed policy, and the value of data-driven service development and improvement. Recent examples of this include consultations about the secondary use of health data, incentivising the capture of data at the point of care delivery, and the My Health Record. While discussions will continue on the benefits to be realised by collecting data and using it more effectively, limited attention has been paid to how consumers feel about this new data era and to assessing their data literacy. In 2017, NPS MedicineWise collaborated with the Consumers Health Forum of Australia (CHF) on a research project about consumers’ attitudes to data. The four phases of the project were: a literature review; exploratory interviews with consumers; a survey with a nationally representative sample of consumers; and a jointly hosted thought leadership roundtable bringing together representatives from key organisations involved in digital health and use of data, consumer organisations, and consumers involved in the research.

Publication type: 
Publish date: 
Wednesday, May 23, 2018
Consumers Health Forum and NPS MedicineWise