Health report confirms: consumers want control of their own health data
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 today 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.
The research found that consumers are more likely to give permission to share their data if they understand how their data will be used and any benefits that will come from its use. Almost two-thirds (62.5%) of survey respondents said they would be comfortable with the Government using their data to support health care providers to improve the care of others in the community. The report also revealed that consumers are more willing to share their data when it is for public or individual good, and are significantly less likely to share it if the use is for commercial gain. That said, privacy is a real issue, with nearly two thirds (64.8%) of respondents stating they believe sharing their data is acceptable if they are not identified and just one in five (21.8%) comfortable with their data being shared if they are identified.
Dr Lynn Weekes, CEO of NPS MedicineWise says, “Developing models of consent that are both acceptable to consumers and feasible for research and health communities should be considered a key challenge and priority. The onus is on organisations to put in place clear, transparent, open and two-way communications about how and by whom their data will be used, along with the benefits and any risks. Again, involving consumers in designing these communications will ensure they meet consumers’ needs, building their trust and willingness to share data.”
The Consumers Health Forum of Australia (CHF) was commissioned by NPS MedicineWise in December 2016 to conduct research about consumers’ attitudes to health data. The project and resulting reports were developed collaboratively.
The publication of this survey coincides with the Australian Government’s release of a framework for how data in the My Health Record System can be used and protected for public health and research purposes.
“My Health Record data will be available on a de-identified basis for use by policy makers and researchers to make evidence-based decisions about new health policies and programs to the benefit of consumers. Consultation that shaped the framework highlighted how important it is for the community to have their health care information kept private with the right protections and safeguards in place” says Leanne Wells, CEO of the Consumers Health Forum.
“Without that trust and confidence we know from this research this will negatively influence consumers’ willingness to consent to the use of their data. It is heartening to see that the findings of the research are reflected in the framework, particularly that My Health Record data should not be used for commercial or non-health related purposes, such as determining eligibility for welfare benefits, insurance assessments and direct marketing to consumers.”
The report highlights population sub-groups with specific concerns about data use that will require appropriate consultation and involvement. These include Aboriginal and Torres Strait Islander consumers, cultural groups, consumers who have had experiences that impact on their levels of trust and those who are concerned about discrimination due to mental health or other health issues.
The full report is available for review below.
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Independent, not-for-profit and evidence-based, NPS MedicineWise enables better decisions about medicines, medical tests and other health technologies. We receive funding from the Australian Government Department of Health.
Consumers Health Forum of Australia
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CHF is Australia’s leading advocate on consumer health care issues.
We work to achieve safe, good quality, timely healthcare for all Australians, supported by the best health information and systems the country can afford.