Australians want control over health data

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Australians want ownership and control of their own health data according to a new report jointly published by government-funded NPS MedicineWise and the Consumers Health Forum.

The report, Engaging Consumers in their Health Data Journey Report, is based on a national survey of 1,013 Australians along with qualitative interviews, literature reviews, a roundtable discussion with key stakeholders and consumer representatives.

According to the survey, Australians want control over their health data, with over 96 percent of respondents wanting access to their own health data and 90 percent agreeing they should be asked for permission if either a government department or a private organisation wants to use the data.

The report says consumers are more likely to give permission to share their data if they understand how it will be used and any benefits that will come from its use.

Two thirds (62.5 percent) of survey respondents said they would be comfortable with the government using their data to support healthcare providers improve the care of others in the community.

The report also revealed 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 commercial.

Over two thirds (64.8 percent) of respondents said they believe sharing their data is acceptable if they are not identified but just one in five (21.8 percent) are comfortable if they are identified.

Dr Lynn Weekes, CEO of NPS MedicineWise, said: “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.”

Health minister Greg Hunt recently announced the release of a framework that defines how data on the My Health Record system can be used for research and public health purposes while preserving privacy and security of data in the system.

The My Health Record provides a summary of a person's key health information. It enables the secured sharing of information between them and their clinicians. Every Australian will have a My Health Record unless they choose not to have one by October this year.

“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," said Leanne Wells, CEO of the Consumers Health Forum. 

"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.

“Without that trust and confidence we know from this research this will negatively influence consumers’ willingness to consent to the use 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.”