Health Data Opt-Out Advisory Group minutes May 2026

Date: 6 May 2026

Time: 12pm

Format: Virtual meeting

Chair: Anna Steere

The Chair welcomed members to the first meeting of the Health Data Opt-Out Advisory Group and thanked them for giving their time, experience and expertise to support policy development. Members introduced themselves and outlined the perspective they brought to the discussion.

The Chair explained that the group had been established to provide independent advice, practical insight and constructive challenge as policy options are developed. Members were asked to support an open, solutions-focused discussion, recognising the need to balance public trust, meaningful choice, privacy, legal duties, operational workability and the public benefit of health data use.

The Chair confirmed that the meeting would be recorded to support accurate notetaking and that notes would be published online in a non-personal format. No objections were raised. Members were advised that the published notes would capture the themes of discussion without attributing individual comments, to preserve an environment for frank and constructive debate.

The Deputy Director for Data Policy set out the wider context for the work. Health data has significant potential to improve patient outcomes, support a more effective health and care system and enable high-quality research. These benefits must be balanced with privacy, data security, transparency and meaningful public choice.

Members heard that opt-out reform forms part of the wider data strategy. This includes improving trust among patients, the public and practitioners; ensuring the right rules and legal basis are in place; and ensuring technology and service solutions respect those rules and support public confidence.

Trust was described as central to the policy approach. A clear and meaningful opt-out system was presented as an important foundation for wider health data reform, giving people a clearer way to understand and exercise choice where appropriate. Members were encouraged to provide honest challenge, bring public, professional, technical, legal and operational perspectives into the discussion, and help identify practical, workable policy solutions.

The policy team provided an overview of the current health data opt-out landscape. Members heard that the landscape is complex and fragmented, with different opt-outs and related rights having developed at different times and for different purposes. These include the national data opt-out, the type 1 opt-out relating to GP record data, programme or service-specific opt-outs, project-specific opt-outs, and wider legal rights to withdraw consent or object in specific circumstances.

The current arrangements can make it difficult for the public, professionals and data users to understand what choices are available, what those choices cover and how they can be exercised. Public engagement has shown concern about the number of different opt-outs and the lack of a simple, unified route for people to understand their choices. The overall ambition is to create a more workable, transparent and meaningful opt-out system that supports informed public choice while enabling appropriate use of health data for public benefit.

The group received an overview of public engagement undertaken to date, including national deliberation, inclusive engagement with seldom heard groups, and a quantitative survey. Key findings included public support for:

Maintaining an opt out model rather than moving to an opt-in model.

Remove the ability to opt out of data being used for planning purposes for the NHS. 

Ensure people can meaningfully opt out of data being used for research.

In a redesigned opt out system exemptions should be limited in scope, clearly and precisely defined, and well explained (through examples and with justifications).  

Create a simpler, unified way of opting out that makes it clear to the public what is in and out of scope, giving genuine and substantive choice.

The opt out system should allow people to tailor their opt out choice if they want to, or to make a single choice if they don’t.

People should be reminded of their opt out status regardless of whether they are currently opted in or opted out – from time to time. 

Increase awareness of both the possibility of opting out and the safeguards in place. 

Increase awareness of why secondary data use is important and valuable.

Members heard that the public generally recognised the value of health data for research and wider public benefit, while still wanting meaningful choice, clear safeguards and accessible information. The policy team noted that public engagement findings are central to the reform work, but must be considered alongside legal, technical, operational and policy considerations.

The programme is now in a detailed policy development phase. This phase will test emerging options and assess legal, technical, information governance, communications, operational and implementation implications before final decisions are made. Further work will include stakeholder engagement, GP engagement, public focus groups, system workshops and development of success measures. No final policy decisions have been made; the purpose of this phase is to test options thoroughly before advice is provided to ministers.

Confidential patient information, anonymisation and pseudonymisation

Members discussed whether confidential patient information remains the right foundation for future opt-out policy. Questions were raised about the distinction between confidential patient information, anonymised data and pseudonymised data, including when pseudonymised data may still be personal data and when data may be treated as effectively anonymised and therefore the circumstances in which NDOO applies.

The group noted that public facing explanations need to be accurate while avoiding unnecessary technical complexity. Members also highlighted that the public may not understand technical distinctions between data categories and may expect choice to apply more broadly to health data used beyond direct care. The policy team noted that further consideration is needed on how confidential patient information should be defined, explained and applied in future policy. The policy team also noted that this has historically been a challenging area to tackle and gain broad consensus on, and that it will be an iterative process that will take time.

The policy team explained that the minister had given a steer to explore removing certain uses from opt-out scope and to explore whether greater granularity could be introduced, in line with public recommendations. The group discussed a variety of different options in terms of removing certain areas of data use from scope, in line with key criteria, including alignment with public recommendations. 

Members noted that any additional granularity must be meaningful to the public and workable for the system.

The group discussed the risk that an overly granular NDOO choice may be difficult to understand and difficult to implement. Members also discussed the risk of inconsistent interpretation or definitions being used in ways that do not meet public expectations. A Slido poll was used to test initial views; this was not treated as a formal decision.

Members discussed the need to align opt-out reform with wider legal and regulatory developments, including the Control of Patient Information Regulations, Section 251 arrangements and wider data programmes. The group also discussed data controllership and accountability, particularly in relation to wider proposals such as the single patient record.
Members noted the importance of clarity about who controls data, who is responsible for decisions about data use, and how this will be explained to the public and professionals. The policy team noted that these issues require further legal and policy consideration and need to be joined up with wider data reform work.

Members discussed public concern about commercial access to health data and the difficulty of drawing a simple distinction between academic, NHS, public sector and commercial uses. It was noted that research and innovation often involve partnerships across sectors, and that opt-out scope alone will not address all public concerns about commercialisation.

Members emphasised that public trust would depend not only on what people can opt out of, but also on the governance, transparency and accountability around data use. The group discussed the need to explain clearly how data access decisions are made, what safeguards apply, how public benefit is assessed and how definitions will avoid creating loopholes or inconsistent practice.

Members discussed the meaning of trust in the context of health data. Trust was linked to public confidence that the health and care system will use data competently, transparently and for the right purposes. Members noted that trust can be damaged quickly where people do not understand how their data is used or where safeguards are not visible.

The group also highlighted the need to be clear about data flows that cannot be opted out of. People should not be given a misleading impression of what opt-out choices can and cannot do. Future materials will need to explain the limits of opt-out choice as well as the safeguards that apply where data use is required for direct care, legal obligations, safety or other purposes.

Members emphasised that opt-out reform must consider health inequalities and accessibility from the outset. The group discussed the risk that people may be excluded from understanding or exercising choice because of digital exclusion, language barriers, low health literacy, disability, lower trust in public institutions or difficulty accessing services.

Members asked whether demographic data is available on opt-out rates, including ethnicity, to understand whether groups are more or less likely to opt out. The policy team noted that demographic data is limited and that further work is needed to understand what analysis may be possible. Members agreed that communications and user journeys should be clear, accessible and tested with different communities.

The policy team provided an overview of the Type 1 opt-out and the planned GP engagement work. The Type 1 opt-out operates at GP IT system level and prevents identifiable GP record data from leaving the GP IT system for purposes beyond direct care. Members heard that there is no single unified policy or guidance document that fully explains its application, which contributes to confusion for patients, GP practices and data users.

The policy team explained that a programme of GP engagement is being planned to run over the summer and is expected to include a survey, webinar, deliberative workshops and a sense-making summit. The engagement will explore GP awareness and understanding of Type 1, how it works in practice, how it fits with the wider opt-out landscape and what choice GPs think should be available.

Members raised several issues for the engagement to consider, including:

• whether changes to opt-out arrangements could affect the GP-patient relationship or what patients disclose
• how GP practices would support patients who need non-digital routes
• the potential administrative burden on GP practices and the need to avoid increasing workload
• the need to involve practice managers and other frontline staff such as nurses, healthcare assistants and social prescribers
• the need for clear signposting for patients and consistent messages for professionals; and
• how reforms can avoid increasing health inequalities in diverse communities

Members emphasised that GP practices should not be left to interpret complex national policy without clear guidance, communications and support. The policy team noted that findings from GP engagement will feed into policy development and be brought back to the Advisory Group.

The Chair thanked members for their constructive challenge and practical insight. The next phase of work will include further consideration of confidential patient information and the scope of opt-out choice; assessment of pseudonymised and anonymised data in the context of opt-out policy; alignment with COPI, Section 251 and wider legal reform; and consideration of data controllership and accountability, including single patient record proposals.

The policy team will also continue developing options for scope and granularity, considering governance, safeguards, commercial access and undertaking further work on health inequalities, accessibility and communications. Further engagement will include GP engagement on Type 1 opt-out, engagement with data users, ICBs, data protection officers, research users and system partners, and public focus groups to test emerging policy options.

The next meeting is expected to take place in early June. The agenda will be shaped by the timing of public focus groups, GP engagement and emerging policy questions. The meeting closed with thanks to members for their time and contributions. The Advisory Group will continue to provide advice, challenge and practical insight as policy options are developed.