National public engagement on the use of health data

Background

The Data Saves Lives strategy placed building public trust and transparency at the forefront of our ambitions to harness the power of data for the future of health and care.

Building public understanding through effective and transparent communications is one pillar of how we intend to build public trust, but it is equally important to meaningfully involve the public in decisions and changes to how their health data is used.

To deliver on the ambition for meaningful engagement we made this clear commitment in Chapter 1 of Data Saves Lives:

Progress to date and next steps

Following the publication of Data Saves Lives in June 2022, a number of key decisions and actions have been taken on the best way to deliver on meaningful public engagement.

These include:

• Agreeing that up to £2 million of funding would be allocated to deliver on the public engagement commitments until March 2025, subject to necessary approvals;
• The majority of this funding will be spent on “large-scale public deliberations”, similar to the methodology successfully used by OneLondon . This is widely regarded as best practice for engaging the public on complex, interconnected topics such as health data and how it is used;
• NHSE and DHSC should procure an external supplier with the appropriate skills and expertise to deliver this work, through a fair and transparent procurement process;
• the supplier should recruit a representative and diverse group of members of the public to participate in public deliberations over multiple weekends. They will also ensure that an independent evaluator is in attendance at all deliberations; and
• We will be engaging with an external oversight group to support, challenge and provide guidance on the design and delivery of the deliberations.

Providing that progress continues as planned, the first deliberation event will take place in early 2024 and run through 2024 and 2025. Following deliberations, summaries and an overarching final report will be published, including publicly developed recommendations

What topics do we plan on covering

There are many policies and programmes across the Department for Health and Social Care (DHSC) and NHS England (NHSE), working towards engaging with the public on use of health data, and towards fulfilling the commitments we made in Data Saves Lives. These are the priority policy areas and programmes we are likely to include:

• Development of the three products committed to in the data strategy: the data pact, the transparency statement and transparency hub, and the standards for public engagement.
• Reform of the National Data Opt-Out
• Further engagement on the Federated Data Platform
• Governance structures, data access and accreditation of Secure Data Environments
• Future uses of data, for example within Artificial Intelligence
• Expectations of transparency, including how we communicate and engage with the public
• Buying external software for use within the NHS
• Data for direct care
• Commercial principles and pricing

These topics will be sequenced based on urgency, importance and how naturally they tie together for discussion. Content of the deliberations will be continually under review, and the external oversight group will have influence over the topics included in deliberation.

Programme-specific engagement

Programmes will continue, as they do now, to conduct specific engagement with stakeholders, the public and patients on their work. It is important they do so alongside these wider and larger deliberations.