Sharing Government Health Data With the Private Sector: Community Attitudes Survey (Preprint)

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 in the secondary uses of health data has led to increased interest in what the public thinks about data sharing, in particular, the possibilities of sharing with the private sector for research and development. Although 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 sector. 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 toward sharing health data with private companies for research on and development of therapeutic drugs and medical devices. OBJECTIVE This study aims to explore public attitudes in Australia toward sharing government health data with the private sector. METHODS A web-based survey tool was developed to assess attitudes about sharing government health data with the private sector. A market research company was employed to administer the web-based survey in June 2019. RESULTS The survey was completed by 2537 individuals residing in Australia. Between 51.8% and 57.98% of all participants were willing to share their data, with slightly fewer in favor of sharing to improve health services (51.99%) and a slightly higher proportion in favor of sharing for research and development (57.98%). There was a preference for opt-in consent (53.44%) and broad support for placing conditions on sharing health information with private companies (62% to 91.99%). Wide variability was also observed in 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. The percentages presented are adjusted against the Australian population. 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 the 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 the private sector will require more and better engagement to build community understanding about how agencies can collect, share, protect, and use their personal data.

Sharing administrative health data with private industry: A report on two citizens' juries

“…The findings from this work suggested that both governments and private industry need to address the public's lack of understanding of and trust in the ways in which agencies collect, share, protect and use personal administrative health data. Our national survey found that there was a diversity of opinion in the Australian community and a lack of knowledge about sharing administrative health data, perhaps reflecting variable knowledge and understanding in this domain 13 . However, these findings reflect the views of participants who may not have had the opportunity to reflect on the challenges found in this complex topic.…”

“…Our national survey found that there was a diversity of opinion in the Australian community and a lack of knowledge about sharing administrative health data, perhaps reflecting variable knowledge and understanding in this domain. 13 However, these findings reflect the views of participants who may not have had the opportunity to reflect on the challenges found in this complex topic. Put another way, we do not know what informed Australians consider to be justified and legitimate uses of public administrative health data, including uses which require data linkage.…”

“…We recently undertook a survey and a scoping review, in collaboration with the Population Health Research Network, that examined community attitudes towards sharing administrative health data with private industry for the development of medications and medical devices 13 . This work demonstrated broad public support for the secondary use of health data, particularly for health research, even though there were concerns about the risks that attached to sharing such data 6,7,10,11,14 .…”

Community views on the secondary use of general practice data: Findings from a mixed‐methods study

“…Although most participants in the survey were willing to trust that their GP would take appropriate care of their information, they were not necessarily ready to let their GP decide, without telling them, that their data could be shared for secondary purposes. There is good evidence that patients are not familiar with the extent to which information from general practice records is already being shared, 16‐18,34,52 suggesting a need for a substantial programme of dissemination and education, co‐designed with patients and publics. Transparency is a key element in establishing trust and will be key in seeking to establish the relevant social licence.…”