JMIR Publications

ABSTRACT

Background:

The use of government health data for secondary purposes, such as monitoring the quality of hospital services, researching the health needs of populations, and testing how well new treatments work, is increasing. This increase of secondary uses has led to increased interest in what the public think about data sharing, in particular the possibilities of sharing with private industry for research and development. While international evidence demonstrates broad public support for the secondary use of health data, this support does not extend to sharing health data with the private industry. If governments intend to share health data with the private sector, knowing what the public thinks will be important. This paper reports a national survey to explore public attitudes in Australia to sharing health data with private companies for research on and development of therapeutic drugs and medical devices.

Objective:

To explore Australian attitudes towards sharing government health data with private industry.

Methods:

An online survey tool was developed to assess attitudes about sharing government health data with private industry. A market research company was employed to administer the online survey in June 2019.

Results:

The survey was completed by 2,537 members of the Australian public. Between 50 and 60% of all participants were willing to share their data, with slightly fewer in favour of sharing to improve health services, and a slightly higher proportion in favour of sharing for research and development. There was a preference for ‘opt in’ consent (55%), and broad support for placing conditions on sharing health information with private companies. There was also wide variability in the participants’ views about the extent to which the private sector could be trusted and how well they would behave if entrusted with people’s health information. In their qualitative responses the participants noted concerns about private sector corporate interests, corruption and profit making, and expressed doubt about the Australian government’s capacity to manage data sharing safely.

Conclusions:

This nationally representative survey provides preliminary evidence that Australians are uncertain about sharing their health data with the private sector. Although just over half of all respondents supported sharing health data with the private sector, there was also strong support for strict conditions on sharing data and for opt-in consent and significant concerns about how well the private sector would manage government health data. Addressing public concern about sharing government health data with private industry will require more and better engagement to build community understanding about how agencies can collect, share, protect and use their personal data.