At a glance

Institution: 
Partners: 
Wellcome, Camden Council, Alan Turing Institute
Duration: 
November 2019 - May 2021

Sharing Health and Social Care data has the potential to benefit individual patients, to inform improvements to Health and Social Care services, as well as providing evidence to support Health and Social Care research.

In order to distribute the benefits and risks more evenly across communities, service providers need to understand more about how different communities view, understand and accept data sharing for wider public benefit.

Background to the project

Currently, data sharing, both between public service providers and with patients, is not happening to the extent needed to reap the expected benefits. Understanding Patient Data's work demonstrates that this is the result of significant challenges. Some are technical, relating to lack of systems working together and challenges in matching data. Some relate to the capacity of service providers to share and make sense of the data.

However, Involve's work demonstrates that there are additional challenges. The benefit of data sharing and use is context specific and involves a range of value judgements, particularly about how to distribute the benefits and risks more evenly across communities. Service providers have limited understanding about how different communities view, understand and accept data sharing for wider public benefit. They are therefore often unwilling to take the risk of potentially controversial data sharing.

Deliberative public engagement methodologies such as citizens' juries, citizens' assemblies and public dialogues offer one way of developing an understanding of how different publics make these value judgements.

While these methods have had significant impact on public policy involving science and technology, they rarely support a wider, sustained public debate. A wider, more open form of deliberative engagement is required if service providers are to effectively reflect publics' perspectives and values in decisions about data use and sharing. However, traditional engagement tends to engage those who already have firm views about the topic at the centre of the engagement. This project will pilot a new form of deliberative engagement, distributed dialogue, which aims to involve a diverse group of public participants who would not normally engage in more open engagement processes about technical subjects like data. 

How will it work?

This pilot methodology aims to develop sustained, deliberative engagement with geographically bounded community groups and individuals in Camden.

We have trained community facilitators to engage with community groups in their own spaces using deliberative resources providing participants with information about Health and Social Care data. Alongside this we are supporting them to develop their perspectives on its use both for personal Health and Social Care management as well as for research, planning and service redesign. As a result of the pandemic the start of the process has been delayed and, in order to maintain social distancing, we have moved these deliberations online and are engaging groups online. Camden residents can also engage directly online. 

This deliberation will take place iteratively with community deliberations and findings published every two months, with each cycle of deliberation informing and deepening the next.

What are the expected outcomes?

At the end of the pilot we will produce a policy report and run a workshop in each location to explore the findings and next steps.

We will also produce a forward focused learning report reflecting on the distributed dialogue process as a way of developing sustainable, ongoing engagement between public service providers and communities about Health and Social Care data.