Transformation Directorate

National public engagement on the use of health and care data

First published 29 September 2023

Updated 14 March 2024 – see updates.


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:

Information:

'We will undertake in-depth engagement with the public and professionals, through forums such as focus groups with seldom-heard groups, and large-scale public engagement on topics and questions that are high priority or particularly complex'

We remain dedicated to delivering on this commitment. This page provides a brief update on where we have got to, what to expect next, and insight into our planning process. It will continue to be updated as delivery progresses.

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 over 3 days to discuss and deliberate key questions. These deliberations will be held in four in person meetings in 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 polling: 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

The opt out landscape (August to October 2024)

Focusing on the review and reform of the opt out landscape

Future facing issues (November 2024 to February 2025)

Focusing on:

  • how the public want to be involved in strategic NHS decision making, and in future decisions around data policy and programmes.
  • contextualised uses of data, for example novel uses such as artificial intelligence
  • linkage of NHS and non-NHS data.

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.

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History

Updated 16 January 2024 to reflect updated topic list for deliberations

Updated 14 March 2024 to add methodology section and update topic list for deliberations