This article provides an update on our project with Involve and the Carnegie Trust on balancing public benefit and privacy.
A number of studies suggest that people are much more likely to accept or support data use if there is a public benefit, or at least the potential for public benefit. However, the concept of what is understood by a public return has not been well defined.
A systematic review of 25 studies examining public attitudes towards the sharing or linkage of health data for research found that a key condition for public support was that research must have public benefits. This was variously described as benefits to wider society, or “the greater good”, with a view that the research must have some form of ‘real-world’ value or practical application. In most of the examples, participants balanced concerns about personal privacy with the importance of societal benefits, but in two studies, societal benefits were seen to be more important.
Wellcome’s work on public attitudes to commercial access to health data similarly found that public benefit was the primary driver of acceptability for using patient data. There needs to be a clear benefit to individuals and / or wider society in order to justify breaching privacy. In this study, the interpretation of ‘public benefit’ was very broad and encompassed both benefits to individuals or groups in society, and benefits to big public institutions like the NHS. The report highlights that participants tended not to use the specific term ‘public benefit’ but instead used phrases like “if it helps us”, “if it is in our interests”, or asked “what does the NHS get out of this?”. Individual citizens gaining benefits was also seen as valuable, but there was more weight given to benefits for all of society.
The commercial access report showed that people may be willing to accept private company involvement, if there is also a public benefit. The Confidentiality Advisory Group of the Health Research Authority has explored this issue in more detail, and identified a number of further questions that may be considered in order to assess acceptability:
- Is there clear evidence of benefit specifically to the NHS, rather than other public benefit?
- Is there equity in access to benefits?
- Are there any other non-commercial alternatives, or could the work be done in partnership?
- Will there be transparency and publication of results?
It would be interesting to understand whether people feel differently about the importance of public benefit when health data is used compared to other types of data. Is there a difference in acceptability of data sharing if the benefit is to the NHS rather than wider society?
What we’re doing
Understanding Patient Data is partnering with Involve and the Carnegie Trust on a project looking at how local stakeholders make sense of, and balance, public benefit with individual privacy. In particular, we are hoping to be able to explore whether health data or health purposes are perceived differently.
Workshops in six partner areas
Over June and July, we are convening workshops across England with the help of six local partners:
- Essex County Council
- Leeds City Council
- Manchester Combined Authority
- Melton Borough Council
- Sheffield City Council
- West Midlands Combined Authority.
The workshops are being designed to explore whether, in trying to balance these risks, acceptability shifts depending on:
- the type of information being shared e.g. financial, health or criminal records
- the type of agencies it is shared with e.g. public sector, private sector, voluntary sector
- the context in which the data was originally collected?
And if it does shift, how?
We will be providing further updates on this project here. We hope it will lead to useful resources to support better conversations around public benefit.
The project's final report, Data for public benefit, was published in April 2018.