Two thirds of older Australians say they are comfortable having their de-personalised medical data used for research purposes, according to a new survey.
The survey, published in the Australian and New Zealand Journal of Public Health, asked 2000 Australians aged 55 and over if they found it acceptable to have data that had been collected during their aged care assessment de-identified, collected and used for health research.
A total of 66.7% of participants replied ‘yes’ with a third of this group indicating they would be comfortable for data sharing to occur without their consent.
A larger proportion (41%) of those who agreed said they would only find it acceptable if they were asked first (opt-in) while one quarter (26%) said they would only be comfortable having their data shared if they were first given the chance to opt out.
Meanwhile, 21.5% of participants said it was not acceptable to have their data utilised, and 11.9% said they were ‘not sure’.
A higher proportion (80%) of respondents who had already completed an aged care assessment found the inclusion of their data in a registry acceptable.
“Successful health data registries provide a cost-effective treasure trove of information for researchers, allowing for the evaluation and identification of quality aged are services, products and practices,” writes Stephanie Harrison, Research Fellow in the department of rehabilitation at Flinders University in South Australia, and her co-authors.
Australians are “increasingly concerned about their privacy of their data” but there is a paucity of international research canvassing patient attitudes to data sharing, and this survey will add to the evidence base.
“Data privacy issues are of increasing interest and this study would be useful to apply to a wide variety of settings,” they conclude.
The national MyHealth Record system is being extended to all Australians from November 2018, and a framework for secondary use of data was released by the Federal Department of Health on 11 May 2018. The framework allows for data to be made available for public health and research purposes. Minister for Health Greg Hunt said data “cannot be used for commercial and non-health-related purposes, including direct marketing to consumers, insurance assessments, and eligibility for welfare benefits.”
Insurance companies will not be able to access the data, he added.
People who wish to opt out of the system have been given a three month window to do so between 16 July to 15 October 2018.