Organisational attendees

• National Voices
• Office of the National Data Guardian
• Association of Medical Research Charities
• Nottingham University Hospitals Trust
• Healthwatch England
• Understanding Patient Data
• Royal College of Surgeons
• Academy of Medical Royal Colleges
• Patients Association
• NHS Frimley
• North West London Integrated Care System
• Information Commissioner’s Office
• UNISON
• BMA
• RCGP
• NHS England
• Department of Health and Social Care

Apologies received

• Academy of Medical Royal Colleges
• UNISON
• NHS England

Actions and decisions recorded

Meeting notes

Welcome and introductions

• Chair welcomed members to the call.
• Apologies were noted.
• Introductions of members, including noting any conflicts/declarations of interests.

Terms of reference (TOR)

• The chair welcomed comments on the terms of reference for the group, which had been circulated ahead of the meeting. The following amends were agreed:
• Key areas of discussion and feedback on the Terms of Reference were as follows:
  • Include wording to reflect members representing their own and their organisational member’s expert views.
  • Include narrative on how the group fits within the broader Data Saves Lives landscape.
  • Update to reflect that where possible, group member’s views will be sought on public communications, ahead of publication.
  • Organisational attendance to be included in the TOR, in published action notes and on the website.
  • Chair details to be amended to reflect there will be a consistent chair rather than a rotating one.
  • Wording to be included that makes clear that membership of the group is not an indication of support for the programme, or the topics discussed.
  • Confirmation on Chatham House Rules.
  • Meeting actions notes will not include detail of named commenters.
  • The group were reminded that high level action notes from meetings would be published, on the NHS England website, following approval by the group.

FDP contract award- update and insight share

• FDP Programme SRO, Director of Data Services and the Programme Director gave members an update on the FDP contract award and key insights:
  • On Tuesday, 21 November, NHS England announced that, following an open and competitive procurement, it has awarded a group led by Palantir Technologies UK, the contract to provide the new NHS Federated Data Platform (FDP).
  • In addition, NHS England has awarded a contract to a separate provider, IQVIA, for NHS privacy enhancing technology, as an additional safeguard to enhance the security of data used in the FDP and other NHS data platforms/systems.
  • The FDP Programme Team are currently meeting with the suppliers, as part of the mobilisation phase, to ensure a consistent, unified and integrated approach is delivered.
  • Since the contract award was published, there has been a small spike in the number of opt-outs. This has been quick to reduce, with a decline being seen after a few days. The number of opt-outs will continue to be monitored and are likely to fluctuate in response to media attention.
  • An engagement portal has been established to enable key stakeholders to submit any questions or concerns that they have about the FDP programme.
• Questions were invited from members., the main discussion points were as follows:
  • How do opt-outs rates compare to GPDPR?
    • Opt-out rates are significantly lower and have started to decline after the first couple of days. FDP and GPDPR are fundamentally different programmes and opt-outs have a different impact on each. Opt-out rates will continue to be monitored and members were provided with a link to the National Data Opt-Out Open Data Dashboard.
  • What has been the level of engagement with the FDP engagement portal and are there plans to continue promoting it?
    • There have been approximately 800 visitors to the portal with seven questions being submitted and being responded to. NHSEs Contact Centre are managing enquiries and taking calls, however contact has been limited to date. The Engagement Portal will continue to be promoted to the public to provide feedback, register interest in taking part in future engagement activity, or to ask any questions not covered in the public information and FAQs.
  • Will there be any regular briefings to ICBs about the programme and communication materials shared?
    • Engagement with ICB colleagues has taken place ahead of contract award and there will be a regular programme of engagement activity throughout the programme.
    • Ahead of the contract award, the FDP Communication Team issued a communication toolkit to Trusts who were pilot sites and Regional Directors. The toolkit provided an overview of the FDP programme and signpost for further information, as well as providing key communication materials and resources. This support and engagement will continue through transition and adoption, and checks will be made to ensure ICB colleagues are included in this.
  • How does the contract value account for platform development and subsequent product development?
    • The overall contract value of the FDP Programme is £480 million over a period of 7 years, which is contractually 3+2 +1 +1. £330 million of this is used towards the development of the platform. £150 million will then be used for a multi-vendor solution exchange, where suppliers can bid to undertake product development. The commercial strategy, including market engagement, for this is currently being developed and will be brought back to the group once ready for review.
  • Discussion on opt-out public messaging and expectations.
    • The FDP Frequently Asked Questions provides information on opt-out in simple and clear language, however the group acknowledged that opt-outs in a topic, in general, that has low levels of understanding, and more work is needed to make clear how opt-outs apply to how data is used within the FDP.
    • Members were keen to discuss the opt-out policy more broadly, and it was agreed this request would be shared with the National Data Advisory Group Chair, DHSC, who has responsibility for the policy.
    • There is experience of service receiving questions and concerns from the public and patients. It will be important to continue to support communications.
  • How ready are Trusts and ICBs to use the Federated Data Platform, particularly when some may have older versions of software and systems?
    • The availability of live data is crucial to support the NHS to operate efficiently and effectively, to support the delivery of the best services possible for patients. NHSE Pilots have been undertaken across a range of trusts with different levels of digital maturity. The pilots demonstrated the ability of the pilot software to interoperate with different levels of digital maturity. In addition, as part of readiness assessments, each Trust will undertake a robust baseline assessment to ensure the correct support is in place to ensure success.
  • Are there any plans for proactively responding to articles/social media?
    • The FDP Programme team are responding to media outlets to challenge inaccuracies and misinformation, as well as encouraging the sharing of accurate messages and information through NHS England social media and partner organisations. The communications team will continue to monitor outputs in the media, and review handling strategies as needed.

FDP roadmap

• The Director of Digital Services and the FDP Programme Director gave members an update on the FDP roadmap and governance arrangements.
  • The FDP Programme has now transitioned from procurement into the mobilisation phase.
  • A plan on a page was shared, and the key programme milestones were discussed. Plans will continue to be iterated based on conversations with suppliers.
  • The group were reminded that FDP is different to the NHSE Pilots, as data will be treated in a different way which requires a migration from the existing Foundry solutions onto the FDP, which will include privacy enhancing technology.
  • There will be approximately six months for enablement activities, and the FDP Programme team are working with the suppliers to identify opportunities for delivering activities in parallel where possible.
  • As the FDP Programme transitions into mobilisation, the team are starting to stand up programme governance to support implementation. This structure covers both oversight and assurance, as well as governance required at an operational level. FDP Programme forums include representation from NHS England, DHSC, suppliers, and external organisations, where appropriate.
  • The FDP Programme governance includes a number of multiagency advisory groups, all of which support the delivery and of the programme.
• Key questions and discussion points were as follows:
  • Will NHS England be using the FDP before the privacy enhancing technology is in place?
    • No, the PET will be in place ahead of any trusts transitioning to the FDP.
• Will data be integrated within a secure data environment between different guardians, and will data be accessible for research purposes?
  • Secure data environment (SDE) is the generic term for the way NHSE will provide access to NHS data in the future.
  • The FDP is for the NHS, or those commissioned by them, to access data for direct care and population health planning purposes.
  • The NHS Research SDE Network is for external users and/or those conducting research to access data.

Opt-outs and information governance

The FDP Information Governance Lead provided key messages to the group.

• FDP is a system and as such will adopt policies and procedures that are laid out by NHS England and DHSC, which has happened throughout the programme, procurement documentation and any documentation we have created for opt-out.
• The FDP Programme Team are developing a public facing page which provides a detailed explanation on opt-out within the FDP Programme. The team have also reviewed all products due to transition into FDP and assessed any of those where opt out does apply. Currently there aren’t any.
• Recognition that there does need to be a wider discussion about the public perception and understanding of opt out.
• Questions invited from members on information provided so far. Key questions and discussion points were as follows:
• What engagement has taken place for opt-out?
  • Within the FDP programme, there has been a wide range of engagement including patient participation groups, in which feedback has resulted in a more detailed information source for opt-out within FDP to be developed. The FDP Team also ensure consistent messaging with the nation opt-out team.
  • The more detailed information source will be shared with this group for review and comments.
  • Recognition that, through wider patient engagement, there is high support for data being used for direct patient care.
  • There is an opportunity to learn from other programmes on communication and engagement channels which can be used to optimise reach to support professional staff across services. The group are encouraged to share feedback to support this.
• Wider communication on the data agenda
  • There is a need to look at wider communications around the whole data agenda and communicating out to staff to support responding to public and patient questions and concerns. This needs to include key elements such as:
    • Working with the FDP Check and Challenge Group to ensure best use of funding for genuine public dialogue and deliberation.
    • Have an ongoing dialogue with staff, particularly in Sites where they are implementation data integration tools and ensuring reviews consider benefits and disbenefits.
    • Have a real understanding of the potential for data integration tools which can only be identified through being on the front line with staff and walking alongside them.
• FDP opt-out and the wider national opt out scheme
  • There is a wider discussion to be had for the national opt-out. A piece of work is due to take place in Quarter 4 of 2023/2024 regarding the opt-out policy development, which will include wide scale public engagement.
• What are the plans for the FDP Programme in relation to potential legal cases?
  • For any potential legal cases, the FDP Programme Team will take counsel from their legal team.
• Will there be a more detailed opt-out document for Information Governance leads?
  • There is a FDP Information Governance Framework in development which includes specific communications and a deployment pack that’s being co co- created with IG colleagues. This will be sent to Information Governance leads in FDP instance organisations. Agreement to share the draft with the group once it has been reviewed by internal FDP Information Governance forums.

Future meetings

• Agreement from the group to meet more frequently over the next few months. A monthly cadence was agreed.
• Although there is no immediate needs, there was agreement to consider sub-working groups as and when needed.
• A doodle poll will be circulated to determine a meeting date for December.

Any other business and close

• The Medical Director for Transformation, NHS England, thanked the group for their continued support and input during the discussion.
• Members were thanked for their time and the meeting was closed.