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Finding the balance

Douglas White, head of advocacy at the Carnegie UK Trust, evaluates the risk-benefit relationship of data sharing within the public sector, highlighting the importance of transparency.

Data is in the news a lot at the moment. With GDPR coming into force and the continued fallout from the Facebook and Cambridge Analytica revelations, our personal and collective attitude towards how data is gathered and used, across all aspects of our lives, is changing rapidly.

This should be seen as a welcome upturn in public interest and attention on this issue. Recent research by the think tank Doteveryone shows that our understanding of these matters has been somewhat limited to date. More than 80% of people don’t realise that information can be gathered about them from data that others have shared; 70% don’t understand whether or how free-to-use apps share user data as part of their business model; while nearly half don’t realise that the data they share online influences the adverts they see.

Meanwhile, Ofcom recently reported that when buying goods and products online, only one in three internet users look for a guarantee that their data won’t be shared.

We have now come to a significant turning point, with expectations of transparency growing, and indeed required. Public services are no exception to this. Providers have  a greater responsibility in how they balance the risks and benefits of using personal data to help improve their services.

At the Carnegie UK Trust, working with our partners at Involve and Understanding Patient Data, we’ve recently been focusing on one important aspect of this debate: how data is shared across different departments and organisations to develop and deliver public services.

It is well understood that the opportunity  to share data between multiple service providers presents considerable potential in helping to improve services – and ultimately outcomes for citizens. From allowing for greater allocation of resource and reducing duplication and waste, to identifying the root cause of problems and developing shared outcomes, the sharing of data has become  a standard part of the business of delivering services – and contributes to better efficiency and quality of service for end users.

But data sharing also brings risks to be mitigated: from concerns about the security of data management, to legitimate fears about the infringement of personal privacy and freedom from stigmatisation. Finding the right balance in each initiative is essential to maximising the value of data while protecting the public from harm.

Our research in this area has aimed to explore how local authorities and public services across England understand, define and value the benefits deriving from the use of personal data. We engaged with over 120 participants from local authorities, emergency services, the NHS, housing associations, universities and the voluntary sector, each of which brought their own perspectives, experiences, reservations and aspirations to the discussion.

Through this process, we found that public service providers can struggle to apply clear or consistent criteria to help identify and evaluate the benefits and risks of sharing different types of personal data for public good.

This presents challenges. In some cases, data sharing may take place in a way which, while entirely legal, may struggle to secure widespread public support. In other cases, the lack of a clear process for assessing benefit and risk may – quite understandably – promote a cautious approach amongst providers, which can lead to opportunities to share data for public benefit not being fully exploited.

From this analysis, we identified three key principles to help service providers gain confidence and social license to share and use data more widely: that data should be purposeful, proportionate and responsible. We defined these as follows:

• Purposeful: data should provide direct and tangible benefits to individuals while delivering positive outcomes and achieving long-term impacts by addressing root causes of significant social problems;
• Proportionate: the amount of data shared should be minimised and have clear parameters while considering associated sensitivities, whether personally identifiable data is necessary and the likelihood of data breaches;
• Responsible: that the use of data will deliver intended outcomes, is justifiable and defensible, can be shared and used securely, and adds significant value in terms of efficiency and effectiveness.

We think these principles are really important, but they can only take you so far. We also wanted to develop something really practical and useful to help public service providers navigate the complex data sharing decision-making process and to more easily identify, classify and evaluate the benefits and risks that data sharing may entail.

We therefore built a new framework for assessing the benefits and risks. The framework asks 18 simple questions to allow public service professionals to weigh up the pros and cons of sharing data in different circumstances. Issues such as the long-term benefits to individuals, the extent to which the root causes of social issues are addressed, the compatibility of the data use with the reason why it was collected, the measurability of the anticipated benefits, and the privacy implications for individuals are all included.

As well as being of value to those delivering services, we hope that the framework can also be a useful tool for initiating conversations with end users, community representatives and the wider public in ways that will increase their understanding of what the complex process of data sharing involves.

Building this deeper, more sophisticated understanding of what people really think about how their data should be used is not only in keeping with the desire and demand from citizens for more transparency, but will also help providers build more clarity, confidence and consistency into their systems – and, ultimately, maximise the benefits and mitigate the risks that data sharing offers.

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