At a glance

Institution: 
Partners: 
Wellcome, Camden Council, Alan Turing Institute
Duration: 
November 2019 - December 2022

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. It aims to connect it to more well established forms of deliberative engagement and pilot the development of a more strategic deliberative engagement architecture

How is the methodology designed to work?

The pilot methodology aims to develop sustained, deliberative engagement with geographically bounded community groups and individuals in Camden and connect these deliberations to a Citizens' Panel.

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. The first set of three deliberations have into the Citizens' Data Panel. This panel operated much like a Citizens' Jury and drafted a Data Charter which was signed off by councillors in January 2022. The second set of distributed dialogues will begin in the summer of 2022; community groups will be invited to comment on the data charter and use it to explore whether specific data projects should go ahead or not. A second citizens' panel will be run in the winter to evaluate the impact of the Data Charter on Camden's decisions about how to use data. This panel will draw on the community deliberations to ensure that it has access to perspectives from a diverse set of community groups. The expectation is that this process will continue iteratively over time. 

How's it going?

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 participants 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 was delayed and at the end of 2020, in order to maintain social distancing, we trialled moving the community workshops online. While we were able to support a small number of community workshops which generated helpful insights, overall the trial demonstrated that this methodology requires face-to-face workshops.

The perspectives we were able to collect, augmented by interviews with a cross-section of Camden residents, supported the deliberations of the Citizen's Panel which took place in September 2021. The Panel drafted a Data Charter. This was signed off by the full Council in January 2022. We are then hoping that the second set of distributed dialogues about the Data Charter can start in Spring 2022. 

What are the expected outcomes?

By the end of this pilot the aim is that Camden will have the foundations of a network of community groups engaged and willing to deliberate on proposed data projects, using the citizen generated Data Charter as the foundation for their input. Overtime this networked deliberation is expected to support the development of trustworthy data governance by Camden. 

Involve will 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.