The benefits of sharing data are obvious, aren’t they?

Author: Simon Burall, Senior Associate at Involve

In this comment piece, as part of the Observatory’s Data Fortnight, Simon Burall from Involve discusses the balance between the public benefits and potential risks of data sharing. He suggests three questions that public service providers should ask before sharing data and a framework to mitigate those risks.

Imagine you’re a patient with a long term, chronic condition who has regular appointments with your GP, the physiotherapist in the local hospital and the consultant in the centre of clinical excellence fifty miles away. Now imagine having to explain the changes in your symptoms to each of them because there’s no shared record about the progression of your condition following each separate consultation.

Now imagine that you are also trying to claim Disability Living Allowance because your condition means that you can’t work and having to repeat the conversation with a government official, possibly including some embarrassing details about your incontinence.

You also think it’s incredible that the local council appears unaware of all of the people in your community with conditions like yours. As a result, they are unable to provide a joined-up care package which would benefit you, and if rolled out at scale would save the authority thousands of pounds a year.

The benefits you would gain if the health service shared data about you directly with the DWP, and anonymised statistical data with the council, could be immense. The resultant savings in terms of time saved by not having to repeat the same conversation with multiple highly paid professionals could be redeployed to provide more frontline services.

For many, this raises questions about why more data isn’t being shared between public service providers.

However, now imagine you live in a diverse neighbourhood with lots of local businesses, cafés, restaurants and clubs which provide vital employment opportunities for local people. The sudden appearance of lots more police on the streets leads to articles in the local paper about a spike of violent crime. Because of this, fewer people now come to sample the nightly delights of the area.

You may not know it, but the sharing of anonymous data about the number of stabbings by postcode district has been shared between the local A&E and the local police. The rationale, the obvious public benefit in fact, is to use public data more effectively to reduce serious injury. But the unintended consequence is that a café and local restaurant have gone out of business and four local people have lost their jobs.

To cap it all, the local paper has got hold of the data about stabbings, combined it with police reports and interviews with local people and is now printing the pictures of those it says are responsible for the stabbings – the data which the A&E department thought was anonymous actually wasn’t; a little cross-correlation and old fashioned journalistic leg work has led to possible re-identification which risks stigmatising people not even accused of a crime.

Looked at through one lens, the public benefit of sharing administrative, personal data between different public services is obvious; we should remove all barriers and just get on with it.

However, as the benefits move from obviously being directly for specific individuals towards the wider, more nebulous ‘public benefit’ it becomes more difficult to articulate and balance against the wider sets of risks which also accrue. And while many claims are made for the benefits from such data sharing, they are rarely, if ever, clearly defined.

In a new report, Data for Public Benefit: Balancing the risks and benefits of data sharing, Involve, Understanding Patient Data and the Carnegie UK Trust unpack and explore the tensions between reaping benefits from data sharing and the risks of sharing data.

The report is based on the findings from a series of six workshops in different local authority areas across England. The workshops brought together over 120 professionals from the public and voluntary sectors (working in the fields of housing, criminal justice, health, social care and welfare) to explore how they understand, define and value the public benefits which could be derived from the use of personal data.

Three clear tests emerged from our research for enabling public service providers to gain the social licence to share and use data more widely. These are that data sharing should be:

  • Purposeful

  • Proportionate

  • Responsible

Five further key features that a data sharing initiative designed to deliver public benefits should be able to demonstrate were identified:

  1. That it enables high quality service delivery which produces better outcomes for people, enhancing their wellbeing.

  2. That it delivers positive outcomes for the wider public, not just individuals.

  3. That it uses data in ways that respect the individual, not just in the method of sharing but also in principle.

  4. That it represents and supports the effective use of public resources (money, time, staff) to enables the delivery of what people need/want from public services.

  5. That the benefits are tangible, recognised and valued by service providers and the wider public.

The report uses these principles to present a new framework which sets out questions for public service providers to use to assess whether these tests have been met.

The framework aims to provoke discussions among public service providers and provides a platform for engaging the public in an informed and meaningful dialogue on the risks and public benefit of data sharing.

The next phase of this work will be to work with those local authorities, which are leading the way in developing more effective data sharing arrangements, to develop better ways of engaging the public in the complex tensions and trade-offs that such arrangements raise.

 

For more information contact Simon Burall: simon@involve.org.uk.