National public engagement on the use of health and care 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.

We are working with Thinks Insight and Strategy to deliver this work. Timelines and methodology are included below. Following deliberations, summaries and an overarching final report will be published, including publicly developed recommendations

Methodology

We have developed an approach to build public trust and confidence by generating opportunities for the public to meaningfully influence policies and programmes.

This approach combines three tiers of engagement, repeated three times across 2024/25.

Each cohort of engagement comprises:

Core deliberations: bringing together 120 people who are reflective of the population of England, coming together to discuss and deliberate key questions. Previously, our deliberations have been held over three in person days, but are changing slightly for this cohort to two in person days and three shorter virtual workshops. The in person deliberation days will be held in four regional hubs, linked together through technology.

Inclusive engagement: to engage groups for whom participation in deliberations is unsuitable, we plan to run 10, one day workshops, with around 8-12 people per workshop. We will primarily work with intermediary groups to reach this audience.

Deliberative survey: designed to bridge the gap between deliberation participants and the public, we will conduct deliberative polling with a nationally representative survey of 1,000 respondents.

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.

We plan to focus this engagement around three themes, though this is subject to change throughout the engagement programme:

Principles of data use and access (May to July 2024)

Focusing on:

• the development of trust products committed to in the data strategy, including the data pact and the transparency statement and transparency hub.
• public expectations on commercial models and the value of NHS data.
• governance of secure data environments

Linking primary and secondary care data (November 2024 to January 2025)

Generating public recommendations on the linking of primary and secondary care data, including a focus on data within the GP health record.

The opt out landscape (February to April 2025)

Focusing on the review and reform of the opt out landscape.

These deliberations will need to support development and delivery of programmes including the Federated Data Platform (FDP) programme and the NHS Research SDE Network, building on previous and ongoing specific programme engagement.

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.