Health Data Opt-Out Advisory Group minutes June 2026

Date: 3 June 2026

Time: 12pm

Format: Virtual meeting

Chair: Anna Steere

The Chair welcomed members to the second meeting of the Health Data Opt-Out Advisory Group and thanked them for their continued engagement. Members of the Department of Health and Social Care and NHS England policy, information governance, communications and programme teams introduced themselves. New attendees and those deputising for others were also noted.

The Chair explained that the first meeting had provided a broad discussion on the opt-out landscape, public trust and wider reform considerations. This meeting focused on specific policy questions, including granularity of choice, opt-out status after death, children and people lacking capacity, proxy decision making, and communications about opt-out status.
Members were invited to declare any conflicts of interest. No conflicts were raised. The Chair explained that the meeting would include breakout discussions to enable members to consider issues in smaller groups and report back into the main meeting.

The policy team introduced a discussion on whether the national data opt-out should remain a simple choice or provide additional granularity. Members heard that the current model is a simple in or out choice. Public engagement has suggested that the public would like to tailor their choice more specifically, while other feedback has emphasised the importance of simplicity and clarity.

The policy team noted that earlier behavioural science testing, undertaken when the national data opt-out was developed, found that providing more options did not necessarily lead to clearer or more specific decision making. If more granular options are developed, further testing would be needed to understand whether people can understand and use those choices meaningfully.

Breakout discussions identified a broad desire to keep the opt-out system simple, actionable and understandable. Members noted that the current system is already complex in terms of guidance, interpretation and implementation, and that additional public facing choices could create barriers for both individuals and organisations responsible for applying the opt-out.
Members also recognised the principle behind more tailored choice. Discussion considered whether major national data infrastructures or programmes could have clearer and more specific opt-in or opt-out mechanisms, particularly where data may be used beyond direct care. Members noted that this could make public choice feel more meaningful and responsive to levels of public trust in major programmes. However, members also recognised that multiple complex choices could be difficult for the public to understand and engage with in practice.

The group discussed whether granularity could be addressed in other areas of the system, such as data governance, accreditation, stronger safeguards or clearer controls over types of data use, rather than through additional choices in the individual opt-out journey. Members noted potential unintended consequences of greater granularity, including increased administrative complexity, impacts on data quality, implications for planners, commissioners, researchers and clinicians, the risk of bias in some datasets, and inconsistent interpretation.
Members suggested that if granularity is pursued, any detailed options should be tested further with the public, including people who have already opted out, so that the trade-offs between simplicity, choice and workability can be explored transparently.

The group considered how opt-out status should apply after a person has died. Members heard that data protection law applies to living individuals, but confidentiality considerations remain relevant after death. Health information can also remain sensitive after death, including where it contains information relevant to living relatives, such as genetic information.

The current position is that where a person has opted out during life, that opt-out continues after death. There is currently no mechanism for a person to say that they wish to opt out while alive but would be content for their data to be used after death.

The group discussed whether there should be a mechanism similar in principle to organ donation, where a person could choose that, after death, their health data may be used for research or wider public benefit even if they had opted out during life. Members recognised that people may hold different views on this issue and that any future proposal would require careful public testing.

Key issues discussed included how a post-death data choice would be framed and communicated, whether comparison with organ donation would be appropriate, how confidentiality and family sensitivities would be managed, and how any such choice could be implemented in practice.

The group considered possible changes relating to children, people who lack capacity, and proxy decision-making. Members heard that 13 is the age at which children are generally presumed under data protection law to be able to make their own decisions about the processing of their personal data online. Where a parent or guardian has made an opt-out choice on behalf of a child before that point, the choice remains in place unless the child later changes it.

Members considered whether children should be reminded of their opt-out status when they turn 13 and whether they should receive information about how NHS data is used and what choices are available. Members broadly supported the principle that young people should receive clear, age-appropriate information. However, they noted that communication should not focus only on children who have already been opted out; all young people should have access to information about data use and choice.

Members discussed the need for a supportive approach rather than simply asking 13-year-olds to make a binary decision on opting out. Suggestions included linking data choices to wider data literacy and education, supporting parents and guardians to have conversations with children, and considering the needs of children with special educational needs and disabilities.

The group also discussed whether the proxy process should be digitised. Members were broadly supportive of making the process easier and more accessible, provided that non-digital routes remain available. It was noted that any digital proxy approach should align with existing NHS login proxy access arrangements and wider safeguards around acting on behalf of another person.

The group considered whether people should be able to check their opt-out status more easily and whether reminders or wider communications should be introduced. Members heard that people currently have limited ways of checking their status without repeating the opt-out journey. The policy team noted that in May 2026 nearly 17,000 people repeated an opt-out and 443 people repeated an opt-in, suggesting that people are using the process to check or reconfirm their status.

The suggested policy change was to introduce an opt-out status function, allowing people to more easily see whether they are opted in or opted out. If more granular options were introduced in future, the status function could also show a more detailed description of a person’s choices.

Members supported the principle of making status easier to check and discussed whether the NHS App could provide a natural route for routine visibility. Members also discussed whether reminders should be 6 monthly, yearly, event based or integrated into routine interactions. The group noted the need to avoid overcommunication and notification fatigue.

Members emphasised that communication should not only remind people of their status but should also form part of a broader transparency approach. This should explain how data is used, the benefits of data use, the risks and safeguards, and how incidents or concerns are handled. Members noted that information must be accurate, complete and trusted, and that positive examples of data use should be communicated alongside risks and safeguards.

The Chair thanked members for a constructive and detailed discussion. The policy team confirmed that feedback from the meeting will be consolidated alongside wider stakeholder engagement undertaken over recent months.

The policy team will review where further testing is needed, including whether issues should be explored further with the public, internal policy, legal, delivery and information governance colleagues, or data user groups. Upcoming engagement includes data user sessions, continuing design of GP engagement on Type 1 opt-outs and planning public focus groups to test relevant policy options.

The policy team intends to bring potential changes back to the Advisory Group in the round once feedback has been consolidated and the areas requiring further discussion are clearer. Resource permitting, further policy work will also consider the wider opt-out landscape, recognising continuing feedback that the current landscape is confusing and fragmented.
The date of the next meeting is to be confirmed and will depend on engagement timelines. The meeting closed with thanks to members for their time, openness and contributions.