Consumers Health Forum and NPS MedicineWise published the Engaging Consumers in their Health Data Journey Report two months before the opt-out period starts for My Health Record.
The report revealed that a large portion of the Australian population are in favour of having a My Health Record created for them. It confirmed that Australians want ownership and control of their own health data. However, the results also emphasized the need for a system to Australians for consent if the data will be used by the government, private companies, and researchers.
Dr Lynn Weekes, CEO of NPS Medicinewise shares this view saying, “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.”
Leanne Wells, CEO of the Consumers Health Forum of Australia said “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.”
“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” said Ms Wells.
The comprehensive health report detailed the following:
- 96% of Australians believing they should have access to their own health data
- 90% of respondents agreeing they should be asked for permission if either a government department or a private organisation wants to use the data
- 62.5% of survey respondents are comfortable sharing data with the Government to support health care providers in improving care of others in the community
- 64.8% believes sharing of unidentified data is acceptable and 21.8% comfortable with sharing data if they are identified
The opt out period, scheduled to start on 16 July will run until 15 October 2018. Australians who didn’t opt out will have a My Health Record created for them automatically a month after 15 October. It is important to note however, that Australians can cancel or create one anytime even after the opt-out period. To opt out visit the My Health Record website or by calling 1800 723 471 for phone based assistance.
Consumers Health Forum CEO Leanne Wells believes the period will give Australians enough time to learn more about My Health Record.
“My Health Record is a key step in the shift from health consumers as passive patients, to consumers as active partners in their own care.
“For too long, healthcare has lagged behind in exploiting the clear benefits of information technology to provide prompt, secure, and precise patient information. For these benefits to be realised and a consumer-centred and digitally enabled health care system to become a reality, consumers will need to be involved in using and improving innovations such as My Health Record.
“Consumer trust and confidence in My Health Record is essential for its success, and an effective awareness and education campaign that reaches all Australians is necessary to allow each of us to make an informed decision about whether or not to opt-out.” CEO Wells said.
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