Organisational attendees

• National Voices
• Office of the National Data Guardian
• Association of Medical Research Charities
• Healthwatch
• Understanding Patient Data
• Academy of Medical Royal Colleges
• NHS Frimley Integrated Care Board
• Information Commissioner’s Office
• NHS England
• Department of Health and Social Care
• Academy of Medical Royal Colleges
• Royal College of General Practitioners (RCGP)
• NHS Confed

Apologies received

• Patients Association
• Nottingham University Hospitals Trust
• UNISON

Actions and decisions recorded

Meeting notes

Welcome and introductions

The chair welcomed all members to the call and noted any apologies.

Introductions of new members took place as well as noting any conflicts/declarations of interests.

Large-scale public engagement update

The large-scale public engagement lead provided an update on the Large-Scale Public Engagement Programme, including an update on the research findings publication.

The large-scale public engagement lead reminded the group about the research which has been conducted in regard to public attitudes to data and health and care. The research findings are now in the process of being published and are due to be available in May 2024. The findings will feed into, and help shape, the Large-Scale Public Engagement Programme. A key indication highlighted was that the findings are in line with other studies that have been conducted recently by organisations such as the Centre for Data Ethics and Innovation and the Health Foundation. The findings will be shared with the check and challenge members once published. A discussion on the findings will be planned as a future agenda item.

From May 2024 to June 2024, the first cohort will take place, which will be focussing on how data is currently used across health and care, including how data is used for research. Two products will be taken to the public in this cohort, these will be a data pack to outline what the public can expect from the health and care system and what the health and care system can expect from the public, and a transparency hub and transparency statement. This cohort will be happening in a national level, but it is complemented by regional engagement largely led by the Research Data Environment Network.

From August 2024 to October 2024 the second cohort will take place, which will focus on the opt-out landscape. From November 2024 to February 2025, the third cohort will be future facing focussed.

Each cohort has three tiers, with core deliberations at its core which brings together 120 people from around the country for a three-day virtual session. A range of locations are pulled from for each cohort to ensure there is appropriate representation and diversity.

The first cohort deliberation 3 day session will move from introductions, context/background setting, and case study reviews on day 1 to a focus on data for research and returning the value of NHS data on day 2, and then re-grouping on day 3 to reflect on discussions and start to form recommendations as well as focussing on the data pact for health and social care. The large-scale public engagement lead emphasised that three days weave through appropriate expert voices, such as people, patients, and service users to ensure balance of opinion and discussion. This diverse use of expert voices will be a key theme across all cohorts.

The large-scale public engagement lead noted that discussions don’t preclude program specific engagement. As the Large-Scale Public Engagement Programme focusses on national data policies, it is not exclusively engaging on FDP. However, the Large-Scale Public Engagement Programme will look to ‘weave in’ programmes such as the FDP through the engagement as case studies to help draw out general topics and themes for discussion.

A query was asked as to whether Healthwatch could attend the cohort discussions as an observer. The large-scale public engagement lead agreed to link in with Healthwatch to arrange. The FDP programme delivery director also agreed to discuss any further Healthwatch engagement opportunities within the FDP Programme.

The group asked if the planned opt out discussions included any documentation or thoughts on how NHS England views the opt out landscape. The large-scale public engagement lead confirmed that the discussion will be a listening exercise with a focus on empowering the public to give recommendations on how we could reform the landscape, including ensuring good understanding of opt outs and enabling understanding to support informed decision making. Closer to the point of this cohort taking place, agreement for the Large-Scale Public Engagement Programme team to attend the FDP Check and Challenge meeting to provide updates and share information as an when appropriate.

The group agreed that the use of programmes, including FDP, via case studies, would be helpful to support discussions. The group advised that it would be helpful to include brief introductory background information on the FDP when sharing FDP case studies to enable understanding of context. The group advised that, during discussions on working with private suppliers re highlighting the different ways we use data in health and care, examples of different types of commercial organisations are helpful to share to help build context, and this should include examples from current NHS England Programme suppliers.

The chair queried whether the research findings will be shared before or after publication. The large-scale public engagement lead agreed to find out and provide a response on this query.

Action: Large Scale Public Engagement Team to present research findings to the FDP Check and Challenge Group.

Action: Large-scale public engagement lead and FDP programme delivery director to discuss further engagement opportunities with Healthwatch.

Action: Large Scale Public Engagement Team to advise on when the research findings publication can be shared before publication.

Action: Large Scale Public Engagement Team to feedback on deliberation discussion outputs regarding Opt Outs.

Minutes from previous meeting

The minutes to be reviewed offline, with any feedback or comments provided by Monday 22 April. After this time, the minutes will be published.

For action CAC-A22 the FDP head of communications confirmed that the patient panel will be reviewing this piece initially, with a view to share a drafted version with the FDP Check and Challenge members for feedback and discussion at the next FDP Check and Challenge meeting. If available, a readout of this piece will be shared with FDP Check and Challenge members in advance of the next meeting.

For action CAC-A24 the FDP head of communications indicated that this topic would be brought to the May 2024 FDP Check and Challenge meeting.

For action CAC-26 the FDP head of information governance (IG) outlined that they are waiting for any further feedback from the group in regard to opt out and communications relating to FDP opt out. FDP Check and Challenge members in the session had no further feedback to provide. The head of IG advised that an updated set of FAQs are in development regarding this.

The chair raised a question on behalf of the group to confirm which FDP use case the Antimicrobial Resistance Tool sits within. The FDP head of IG advised that this tool sits within population health and advised that previous categorisation under elective recovery use case was due to a template error which has been resolved.

The group asked if a future agenda item could include a discussion on the engagement with ICSs about the adoption of the FDP. The FDP Programme Team agreed this will be planned in as a future agenda item for this group.

The group asked for comment and clarity regarding a recent media article regarding FDP Programme support. The FDP programme delivery director reminded the group that the FDP programme has always been based on four lots of procurement, the first being the FDP associated services (FDP-AS) procurement, the second being the Privacy enhancing technology procurement, the third being the marketplace, products, and services to support additional product development across a multivendor landscape, and the fourth being procurement for training and support that we are able to offer to local organisations to ensure they are able to adopt well. The FDP Programme delivery director confirmed that the recent contract announced for KPMG is focussed on the planned support package.

The chair confirmed that the FDP Programme Team will be maintaining a record of questions, feedback and requests from the FDP Check and Challenge group and will share the responses of for these as part of the agenda in future meetings.

Action: Minutes to be reviewed offline, with any feedback or comments provided by Monday 22 April.

Action: Future agenda item for FDP Check and Challenge to focus on ICS engagement.

Action: A log will be maintained to capture queries, requests and feedback from Check and Challenge members, and the responses provided by NHS England FDP Programme Team.

FDP associated services (FDP-AS) and privacy enhancing technology (PET) update

FDP-AS and PET Programme update

The FDP Programme delivery director provided an update to the group on the FDP Programme.

On the 13 March 2024, the FDP Programme technically completed platform enablement, including privacy enhancing technology integration into the platform to ensure that all data flowing into the FDP is registered by privacy enhancing technology. The FDP Programme has since proceeded with two national products which have gone live following full technical assessment and assurance, and has been monitored, as planned, to confirm successful status. The Programme is now progressing to transition for all other national products into the new FDP national tenant.

The Programme has now also begun the transition of our local organisations, who have been piloting the products, over to the FDP. The Programme is currently updating the demand generation for sites later into 2024 and into 2025. The Programme are working with regional teams, systems, and local organisations to communicate the benefits, products, and services available through the FDP. This has resulted in a strong demand pipeline. The Programme are also working with commercial colleagues to develop an approach to the marketplace product development procurement and how this will support a multivendor landscape, of which an update on this will be brought back to the FDP Check and Challenge Group later this year.

The group asked for more information on the FDP Programme key risks, including those pertaining budget. The FDP Programme director outlined that the risk relating to the reduction allocated budget for 2024 has now been mitigated following the Spring Budget announcement. The government have confirmed a budget allocation for the FDP in the Spring Budget, but recognition of the upcoming electoral process and the need to continue to engage with government.

The chair thanked the FDP Programme SRO for their recent re-engagement with Med Confidential.

FDP communications and engagement update

The FDP head of communications provided an overview of recent communication activities. The publications of the FDP-AS and FDP Privacy Enhancing Technology updated contracts are now available, of which links were shared with FDP Check and Challenge members. As part of the run up to national and local transition, the team have taken the opportunity to review and update the web content, including using feedback received from stakeholders and groups, including the FDP Check and Challenge Group. A review of the web content is also in relation to ensuring alignment across FDP IG documentation and the web content, both of which are being shared with key stakeholders, groups, and patient panels for review and feedback.

An FDP Newsletter is due to be launched, of which individuals can subscribe to receive regular updates on the FDP Programme. Details of the newsletter, including instructions to join, will be shared with the FDP Check and Challenge Group.

The FDP Programme have been focussing on developing the approach to public engagement and have been working closely with the Large-Scale Public Engagement Team to complement the wider scale engagement underway. The proposal for FDP public engagement will be presented at a future FDP Check and Challenge meeting.

A Privacy enhancing technology ‘easy-to-read’ guide is in the process of being developed, with a further guide regarding the FDP technical solution due to be developed as well. The Privacy Enhancing Technology guide is being developed in collaboration with IQVIA, as well as patient groups and key stakeholder groups. As part of the review process, the FDP Check and Challenge Group will be provided with an opportunity to feed into this development ahead of focus sessions planned for further refinement.

The FDP Programme have been focussing on developing a benefits dashboard that will be published on the NHS England website in the next few months and will be updated monthly. The benefits dashboard will consist of aggregated data to demonstrate benefits realised through the FDP and will not be reporting on individual site performance. As new products are onboarded, the dashboard will continue to build out and narrative will be developed to support communication of key messages and highlights. The FDP head of communications advised that the FDP Check and Challenge Group will be invited to review and provide feedback on the benefits dashboard.

The FDP head of communications provided a brief overview of the supporting communications activities that regularly take place, such as daily social media reviews which provide the programme with key themes to review. In terms of opt-out rates, there hasn’t been a great variation in rates which is positive, and the FDP Head of Communications reminded FDP Check and Challenge members that the variation in opt-out is not directly correctly in its entirety to the FDP Programme.

FDP Pilot Overview

The FDP Programme delivery director provided an overview of the NHS England pilots, including key benefits realised.

The FDP Programme delivery director reminded the FDP Check and Challenge group on the pilot products; Care Co-coordination Suite Product which has three key modules for inpatients, outpatients, and referral to treatment (RTT), and the OPTICA discharge planning product.

Throughout the pilot phase, these products have been continually enhanced and developed in close collaboration with all of the pilot sites, to ensure the products are meeting the needs of local organisations. These products will be deployed to new sites as the programme moves into roll-out phase in June 2024, but the programme will also be working with pilot sites to offer opportunities to adopt the full suite of pilot products, where some pilot sites may have only adopted a selection to date.

The FDP Programme now has 42 Trusts across the country that are part of the FDP Programme and have been piloting those products, with 77 of those individual products being deployed across those different 42 trusts. There is a good geographical coverage, with further engagement taking place with regions to improve the spread.

Throughout the pilot phase the products have been refined and developed, using user centred design, research, and principles of product development, in line with feedback received from local organisations. This has resulted in the development of two new products last year, which was the Care Coordination Suite Outpatient and RTT modules. There are also now seven further products in early incubation/pilot phase before being available for wider roll out.

The development, implementation, and further refinement during the pilot phase has demonstrated a number of indicative benefits. The FDP Programme delivery director provided an executive summary on the achievements of the pilot in 2023/2024, as a draft document. This included achievements in improved existing products and developing new products, benefits delivered to Trusts and patients, and faster and more efficient delivery.  

The group provided feedback on the executive summary visual, and highlighted that key figures need to be clear and include supportive narrative to avoid any confusion or concern. Example provided was figures pertaining to waiting list reductions and how this is described. The group also advised that the titles and naming convention to be clear and avoid any misinterpretation.

The FDP head of communications thanked the group for their feedback and outlined that the team are focussing on how to ensure benefit summaries are clear and have supportive narrative to provide context and to ensure it is as relatable as possible at the point that this information is published.

The group asked whether there is scope to contextualise the data and identify correlations and causations such as winter pressures and strike action. The FDP Programme delivery director thanked the group for this feedback and advised this would be picked up as part of further development of drawing out these benefits.

The group queried whether the information presented can highlight the impact on health inequalities, as well as monitoring for unintended benefits/consequences. The FDP Programme delivery director advised that the programme will consider this, and tying in the review of case studies, to be able to demonstrate impact on particular patient groups. The FDP Programme delivery director advised that they will take this feedback and discussion as an action to scope further on how to translate the benefits into understanding the impact to individual patients. The FDP Programme senior responsible officer (SRO) reminded the group that the information shown are ‘raw’ figures and have not been reviewed under different lenses at this time. The FDP Programme SRO also reflected on the feedback received and suggested further focus to be done on exploring more background information on baseline processes/statuses, to help create context of benefits achieved.

The FDP head of communications also advised that the FDP Benefits Team are collating qualitative feedback to feed into the benefits narrative, which will also support the identification of unintended benefits/consequences. Agreement for further development of the benefits dashboard to be brought back to the FDP Check and Challenge Group later in the year.

The group discussed the COVID-19 data store as it was recognised that this had an ethnicity resource which was derived from GP data. The group highlighted that a request may be received by NHS England to ask to include this data in the FDP.

Action: An update on the approach to the FDP marketplace product development procurement to be brought back to a future FDP Check and Challenge meeting later this year.

Action: FDP Programme Team to share details and joining instructions to the FDP Newsletter once it is launched.

Action: The FDP Proposal to public engagement to be presented to the FDP Check and Challenge Group at the next meeting.

Action: The Privacy Enhancing Technology ‘easy-to-read-‘ guidance development to be brought to the next FDP Check and Challenge Group for feedback. A read out on any developments prior to the next meeting will be shared where possible.

Action: The FDP Programme Team to consider and incorporate feedback on the FDP benefits summary/communications and present the FDP benefits dashboard at a future FDP Check and Challenge Meeting for review and feedback.

Information governance (IG) update

The FDP IG lead provided a brief update to the FDP Check and Challenge Group.

Key forums have been established, which include the FDP Data Governance Group, as well as regular fortnightly meetings with the National Data Guardianship and the Information Commissioners Office.  

The FDP IG lead provided an overview as to how products move through the IG process. The FDP IG Team create the data protection impact assessment (DPIA), product privacy notice, and an annex for each product, which goes to the FDP Data Governance Group. Following review from the FDP Data Governance Group, the documentation will undergo a number of iteration cycles to ensure appropriate feedback is incorporated. The IG documentation is then submitted to the NHS England IG Team for final sign off before they are released into the system.

Currently, there has been a number of products and IG documentation which have been released into the system. The FDP IG lead has received positive feedback from systems on the IG documentation. The FDP IG lead credited the positive feedback to having comprehensive IG documentation in place as well as the great efforts made in maintaining strong relationships not only the national data guardian (NDG) and information commissioner (ICO), but with forums such as the external IG Group, System IG Group and privacy campaigners. The feedback from these groups, and wider, have helped shape and refine the IG documentation.

The FDP IG team have been focussing on the reviewing the National FDP IG documentation, with a two-day workshop taking place to review, incorporate feedback received from across the FDP Programme and stakeholders, and reframing/refining these documents. The FDP IG lead reminded the group that IG is an iterative process, and the team will continue to engagement listen to the system and groups such as the FDP Check and Challenge Group to ensure the IG documentation grows and evolves.

To note: As part of the ratification of the minutes, colleagues have requested that the following remark is provided: The ICO, NDG, and Check and Challenge Group have continued to engage with the FDP programme outside of the meetings and have provided robust and comprehensive feedback, including appropriate challenge, raising concerns, and engaging in detailed discussions, to support the development of the IG documentation.”

Any other business and close

The next meeting is due to take place on Friday 17 May.

The chair thanked all for their attendance and closed the meeting.