Published on July 17, 2017

There’s benefits in talking about data sharing

What is the public benefit of sharing personal data?

By Kaela Scott

Kaela Scott is Involve’s Engagement Lead for Scotland. She is an experienced facilitator and public engagement practitioner with a keen interest in developing and promoting participatory decision making: in the interests of social justice, democratic accountability and, fundamentally, to deliver better, more credible governance.

Over the past 3 weeks Involve has led a series of 6 workshops, in diverse range of local authority areas across England, exploring how professionals from the public and voluntary sectors understand the ‘public benefits’ of data sharing for the purpose of delivering public services.

Previous public engagement work has tended to suggest that people are much more likely to accept data sharing if there is seen to be a public benefit (or at least the potential for public benefit). However, there has however been little examination of how either the public, or those involved in delivering public services, understand, value or evaluate the wider public benefits data sharing may offer. Our workshops, supported by Understanding Patient Data and the Carnegie UK Trust, aimed to explore these wider questions. Our collective concern was that using ‘public benefit’ as a blanket term to legitimise the wider use of data sharing in public service delivery, without further investigation of what it means to different groups, in different contexts, may allow some of the real concerns the public and other stakeholders have about risks to privacy and the acceptability of different uses of data to either be glossed over or over-emphasised.

The workshops therefore provided an opportunity to explore how different groups define and value the public benefits that may be delivered by the better use of data, and begin to make sense of where an acceptable balance between risks and benefits may lies for different stakeholders.

Before attending the workshops participants received a briefing paper which set out the key elements of the debate, provided background and technical information and established a focus for the discussions:

 Government and other agencies providing public services increasingly collect, store and use personal data about citizens as part of the business of delivering services. Effective use of this data could support agencies to deliver better targeted and more efficient services in ways that stand to benefit the public… Determining what constitutes an acceptable settlement between the proportionate use of data to deliver services that benefit the public, and protecting people’s privacy is a key challenge for policy makers, frontline staff, advocacy groups and the public at large if the ambitions for data sharing are to be realised.

In the workshops themselves we used a series of examples and case studies illustrating how data is being shared and used by public service providers across the country for a variety of purposes that could be described as delivering ‘public benefit’. Selected to cut across a range of sectors (housing, health, welfare, social care and community safety), involve the use of different types of personal data and present variety of intended outcomes, these examples enabled participants to take a ‘deep dive’ into their own understanding of the potential benefits and risks of data sharing. As the exercises built on each other throughout the day, they were also challenged to develop shared criteria to assess the proportionality and relative acceptability of using the personal data that service providers may have access to for different purposes.

Workshop participants also benefited from expert input from:

  • Understanding Patient Data’s research into research into the best language to use when discussing the different forms in which personal data can be shared,, and explaining anonymisation and the likelihood of re-identification;
  • members of the National Data Guardian’s Panel, highlighting how challenges in relation to data sharing, privacy and the public’s expectations of how data about them is used are being navigated in a health and social care context;
  • staff from the Open Rights Group discussing both how the legislative context for data sharing is changing and the risks and opportunities these changes bring.

In total around 120 stakeholders – from city, borough and county councils, the Police, the Fire Service, the NHS, Housing Associations and voluntary sector organisations working in health, care, consumer advocacy and welfare – took part in these workshops, each bringing their own perspectives, experiences, reservations and aspirations to the table.

The information gathered through the workshops is now being compiled into a series of reports (due to be published after the summer) intended to help develop a shared framework to enable conversation about the potential benefits of data sharing to continue with stakeholders and staff across and between organisations, and ultimately with the wider public.

 

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