Agenda

Attendees

1. Introductions

The Chair welcomed members to the meeting. Previous meeting minutes were agreed and approved for publication. No declarations of interest were noted.

2. Health Data Research Service – public engagement

DHSC provided an update on the Health Data Research Service (HDRS), aimed at simplifying researcher access to health data while maintaining safety and security. HDRS will operate as an independent government company with ministerial accountability. CEO and Chair recruitment is underway, and discovery work on user needs and financial sustainability was recently completed.

Panel feedback highlighted:

• HDRS should streamline rather than duplicate existing initiatives
• Public should be treated as beneficiaries; design decisions must reflect public values such as trust and transparency, not just researcher priorities
• Meaningful public involvement should begin promptly, not wait for CEO appointment
• Clear, accessible communication about data use is essential, with lessons learned from past opt-out communications
• Commercial model should include value sharing, with returns flowing back to the public purse
• Patient and public involvement should focus on shaping strategic priorities rather than technical details

3. Data access governance – PPIE involvement

NHS England presented public and patient engagement standards for data access applications. The Data Access Request Service acts as the “front door” for NHS data applications, ensuring governance standards including security, public benefit, and independent review. The panel was asked when public and patient engagement should be reviewed if an application changes.

Panel feedback emphasised:

• Public involvement should occur at every stage of change, not just initial applications, serving both to gather opinion and educate the public
• The process should avoid becoming bureaucratic or delaying research unnecessarily
• Routine, minor changes should be supported without repeated review; significant changes warrant fresh engagement
• Public involvement should feel ongoing and flexible rather than a rigid tick-box exercise
• Evidence of genuine public involvement should be maintained throughout project progress
• A simple, clear engagement policy from applicants should be required, stating which groups will be consulted and when
• Researchers working on condition-specific projects should engage with relevant patient communities or charities before data is released
• The SDE should be the default access route, supported by appropriate governance structures, given its transformative potential for the NHS

4. Opt-out engagement

DHSC presented the current opt-out landscape and recommendations from earlier public deliberation work, covering the National Data Opt-Out, Type 1 opt-out, programme opt-outs, and study-specific opt-outs. Key recommendations included maintaining an opt-out system, simplifying choices, increasing public awareness, and limiting exemptions.

Panel feedback highlighted:

• Only 5.5% of the population have opted out; most people are unaware of the system or default to supporting anonymised data use for public good
• Communications must segment the public rather than treating it as one group: the indifferent majority, those who are highly concerned, and those who should be concerned but are not
• Early, gradual communication is essential; people need time to understand what data use means before being asked to make choices
• De-identified data still carries re-identification risks, particularly longitudinal datasets; public engagement must address this honestly
• Clarity is needed on what “opt-out” means in each context, including whether it applies retroactively or only to future data use
• Opt-out reform should align with GDPR rights, which remain separate and fully applicable
• Communications should use multiple formats and languages, avoiding over-reliance on websites; hard copies and community outreach are important
• GP surgeries and patient participation groups could be a valuable communication channel
• Greater effort is needed to reach communities more likely to opt out, including marginalised groups; working with local councils and public health teams could help reduce health inequalities
• Trust and transparency are essential; lessons from COVID-19 vaccination engagement show the value of co-produced, credible information delivered directly to communities

DHSC welcomed the panel’s input and committed to returning with more developed plans for further discussion.

5. Any other business

• The December meeting was moved to 16 December.
• HR update: Secretariat confirmed that all new panel members have now successfully completed HR processes and been added to systems.