Consumers want control of their health data: report

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Survey results show 96% of Australians believe they should have access to 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, according to a new report jointly published by Consumers Health Forum and NPS MedicineWise.

The Engaging Consumers in their Health Data Journey 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 showed 96.2% of Australians “strongly agreed” that they should have access to their own health data.

Respondents strongly reported that they would like to know which organisations have access to their data (94.6% agree), and be asked permission each time organisations would like to use their data (86.7% agree), especially private organisations (94.3%).

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.

Participants were also asked how they believed their data should be used in an emergency.

Regional respondents were significantly more likely to agree that, in emergency and non-emergency situations, their health practitioners should have access to their data.

Over 99% of regional respondents agreed with the statement that “in an emergency situation, health practitioners who treat me should have access to my data”, compared to 95.8% of metropolitan respondents.

Privacy is a real issue with over 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%) are comfortable with their data being shared if they are identified.

“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,” says Dr Lynn Weekes, CEO of NPS MedicineWise.

“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.

Publication of the survey coincided with the Australian Government’s release of a framework outlining 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,” says 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.”

Last week Australian Digital Health Agency CEO Tim Kelsey delivered a speech at the National Press Club, outlining the collaboration needed between governments, consumers and clinicians to make data and technology work better for modern health.

“By the end of 2018 Australia will be the first country of its size to provide a mobile My Health Record to every citizen unless they choose to opt out – putting health in the palm of everybody’s hand,” Mr Kelsey said.

The full report is available for review on the NPS MedicineWise website.

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