Health Data Opt-Out Advisory Group terms of reference

The Health Data Opt-Out Advisory Group is a time limited subgroup of the Data Strategy Advisory Panel (DSAP). It has been established by the Joint Digital Policy Unit to provide detailed, issue specific, advice on how the public can opt-out of their confidential patient information being used for planning and research purposes, primarily through the National Data Opt-Out (NDOO) and the Type 1 Opt-Out.

The purpose of this subgroup is to provide focused advice and challenge on the policy development and delivery of changes to the opt-out landscape.

The initial focus of this group will specifically be the landscape of opt-outs that cover secondary uses of data. It may be that we need to adjust the scope of the group in future to focus on different priorities, in which case members will be informed in advance. 

This document sets out the Terms of Reference (ToR) for this subgroup. It defines the group’s role, scope, method of operation and membership.

Minutes from the meetings will be circulated after meetings.

The subgroup will not duplicate the role of DSAP or other established advisory forums. DSAP remains the primary external advisory body for data policy and opt-out will periodically be on the agenda at DSAP meetings throughout policy development. Where relevant, advice from this subgroup may inform wider DSAP considerations.

In Data Saves Lives (2022), the Department of Health and Social Care committed to simplifying the opt-out landscape so that it is accessible, simple to action and easily explained. A cohort of national public engagement was delivered in 2025 in support of this goal, and the Ten-Year Health Plan reinforced our commitment to reforming the landscape. 

Our overall ambition is to develop a workable opt-out system that provides meaningful and informed choice to individuals about how their confidential patient information is used for secondary uses (for example, planning health services and conducting research). As of March 2026, we have steers from Minister Ahmed to explore changes to the opt-out landscape. DHSC and NHS England are standing up specific workstreams to develop the detailed policy and delivery plan to underpin these changes. We are committed to transparently and collaboratively developing and delivering these changes, with stakeholders and the public.

The role of this subgroup of DSAP is to provide independent advice to support the Joint Digital Policy Unit in its consideration of the development and changes to landscape of secondary use opt-outs.

Members will be expected to:

• act as a critical friend to the programme, throughout development and delivery
• provide expert, constructive advice on policy thinking and delivery planning, as well as raise concerns and flag emerging issues
• maintain a secure, open, honest and collaborative environment
• conduct discussions under Chatham House Rules. Participants may use information shared during meetings to inform their work but must not attribute comments or views to individual participants or organisations without prior agreement
• engage with the pre-reading materials circulated in advance of meetings
• ensure contributions are balanced and constructive - aiming to identify positive actions and outline wider stakeholder benefits, as well as raising issues or concerns

Not in scope:

The steering group’s role is advisory. It does not have a decision-making function. Whilst the group will be asked to comment and advise on policy development and delivery, decision-making rests with the Joint Digital Policy Unit and ultimately DHSC Ministers.

The meeting will be Chaired by Anna Steere.

The Joint Digital Policy Unit will provide the secretariat and minute the meetings. These minutes will be circulated to members following each meeting for approval before publishing. 

The Chair will provide periodic updates to DSAP, including summaries of advice, areas of consensus or disagreement and any issues requiring DSAP consideration. 

Meetings will be convened on a flexible basis, aligned to programme milestones, policy development timelines and delivery needs. The Chair and Secretariat may adjust the frequency of meetings as required to support effective oversight and advice. Meetings will be planned as far as possible in advance to support attendance.

Members should ensure that the secretariat is made aware if they are unable to attend. Members are encouraged to nominate a suitable deputy if they cannot attend.

A meeting will be considered quorate where the Chair (or nominated deputy) and a minimum of 7 members are present. The Chair may request additional steers by email from the group outside of the regular meeting times, if there is an urgent need.

The current iteration of the subgroup will conclude at the end once a policy statement is published. Governance and advisory requirements for subsequent delivery and implementation phases will be reviewed by the Joint Digital Policy Unit at that point.