Public acceptability of data sharing for research: Trust, security and public interest

Categories: Blogs, Public engagement, Reports

Written by Elizabeth Waind 6 May 2020

The last decade has seen a large amount of literature investigating public attitudes to data sharing, mostly from the perspective of data sharing initiatives with a similar goal to ADR UK. Looking at the findings together and exploring them in a little depth, they all largely reveal the same trends.

Broadly, the public is supportive of administrative data research so long as a few essential conditions are met. First, the research must be in the public interest, with real potential for public good. Second, there must be sufficient safeguards in place to protect the privacy of data subjects and prevent the misuse of data. And finally, there must be trust in the organisations holding and using data, and transparency around what it is being used for.

None of these conditions on its own is enough. They are rather like the building blocks of a sophisticated yet fragile tower: if one block isn’t strong enough to hold the others up, is placed incorrectly or removed entirely, the tower falls. Failure to meet a minimum standard of any of these three conditions could therefore see the demise of public support, not only for the data sharing initiative in question, but potentially for administrative data research more widely.

But public support is not straightforward. No project using administrative data is the same, and the literature shows that the specifics of any given project have an impact on public expectations of the measures needed to protect data. Ultimately, the potential benefits of using data must outweigh the risks to privacy and the possibility of misuse, and both a minimum standard and appropriate balance of the three core conditions of public support must be struck to achieve this.

The complexity of trust

The literature shows that trust is especially complex and heavily reliant on each of the other core conditions outlined. Tangible public interest suggests the organisation or individual accessing data has a worthy motive; and a good level of privacy and security provides confidence that the data handler has both the means and the will to prevent data from being breached or misused. Both conditions are therefore important elements of building and maintaining trust.

Trust is particularly reliant on transparency. Openness about how and why data is being used is itself an exercise which directly builds trust. And if effective communications show that good standards of public interest and data security are in place, the public can trust that the proposed benefits of data use sufficiently outweigh the potential risks. Without transparency, the public is left in the dark about how their data is handled and used, and trust can only suffer.

Previous research also shows that lower trust does not inevitably mean access to data is unacceptable – in some cases, lower trust may simply mean a need for greater data protections and assurances of public interest. Similarly, higher trust does not inevitably mean that access to data is unchallenged, and that the need for public interest and privacy and security is negated. Finding the appropriate balance to demonstrate that the proposed benefits of any given project ultimately outweigh the potential risks is therefore paramount.

What next? A plan for public engagement

The substantial body of recent literature on general public attitudes to data sharing, with their findings consistent over time from the mid-2000s to the end of the 2010s, suggests there is, at this time, no need to repeat work that has already been done. ADR UK strives to ensure that each of the three conditions underpinning public support for research using administrative data as identified in the review are at the core of everything we do.

ADR UK will therefore move beyond widescale, general consultation on the use of administrative data for research and instead build upon existing knowledge about public attitudes by delving into specific areas of research. This will involve seeking engagement with sub-sectors of society relevant to specific projects, or with a cross-section of society on a particular aspect of the use of administrative data. This enables a greater focus on the issues important to the people whose lives may be directly affected by research conducted using their data.

The purpose of such an approach will not be to consult on whether research using administrative data should be done – as has been the focus of previous literature – but rather to guide how, why and when it is done.

We have updated the Working with the Public section of our website to reflect this approach – please visit the page to find out more about how we intend to engage with the specific communities and demographics affected by areas of our work. We will continue to monitor and respond to any changes to public attitudes going forwards and adapt approaches if necessary.

You can read the executive summary and full literature review in Publications & Reports. If you’re a third sector organisation interested in working with ADR UK to increase a community’s representation in our work, please get in touch.

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