Organisational attendees

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

Apologies received

• RCGP
• NHS Confed

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.

Minutes from previous meeting

The minutes to be reviewed offline, with any feedback or comments provided by Monday 18^th March. After this time, the minutes will be published.

For action CAC-A11, the Chair reminded the group that an extraordinary Check and Challenge meeting was held and was used to provide adequate time for the FDP DPIA to be shared, and for comments and feedback to be received. The Head of Communications and Engagement advised that the feedback from the session, and feedback received directly, has been collated and will be presented back to the group in this meeting to clearly articulate where changes have been made based on feedback received.

For action CAC-A15, the Chair clarified that this action is not in relation to how opt-out necessarily applies to the Federated Data Platform but how the opt-out is going to be working overall. The Head of Communications and Engagement advised the large-scale public engagement activity will be delivered in three phases. The second phase will focus on opt-outs. This will be the mechanism that will look to inform any potential changes in opt-out policy.

For action CAC-A17, the Head of Communications and Engagement advised that the numbers received from the public engagement portal are currently low and are not statistically valid, but the current information indicates a small correlation in terms of a slight increase of people with health conditions having higher levels of concern. Further analysis on a larger representational data pool would be required confirm this, but the initial indication does reflect existing statistical research.

Action: Minutes to be reviewed offline, with any feedback or comments provided by Monday 18 March.

FDP Privacy Enhancing Technology

The FDP Programme Delivery Director introduced the agenda item to the members and provided an overview of Privacy Enhancing Technology (PET).

Key presentations points

• PET was procured to support the NHS with the Federated Data Platform (FDP) as its’ first use case. Although it serves the FDP, it is the broader NHS and how we standardise the way we treat data within the NHS, and giving tools to our local organisations that can enhance the way they are able to treat data where it is not for direct care purposes.
• PET will provide cohesive protection and will deliver a standard mechanism to support safe data use including privacy treatments and ensuring appropriate data access.
• Access to data within federated platforms must have an explicit aim to benefit patients and/or the NHS in England and will be carefully controlled to ensure that all uses are legitimate. 
• Only authorised users will be granted access to data for approved purposes and many purposes will not require access to data in an identifiable form.
• PET will apply privacy enhancing techniques such as data minimisation and de-identification to ensure that personal identifiers are removed from datasets (where appropriate) to protect patient confidentiality. 
• The data controller will determine the controls that are required to maintain and ensure privacy. The level of de-identification applied to data may vary based on user roles and requirements for accessing the data. This is in line with Information Commissioner’s Office guidance.
• Security and the protection of people’s personal data is our top priority. PET will be an independent service ensuring that treatment of data is separate from the storage of data; this is to safeguard data and ensure that it is always kept safe and secure. 
• The ambition is that overtime the PET service will become a service available to systems across the NHS enterprise which require privacy services, thus ensuring that all systems meet the highest national standards to protect the privacy and confidentiality of patients. 
• PET has three key capabilities: classification, protection, and audit and management.

IQVIA representatives presented details on the phased delivery of PET within the FDP, and how the three PET capabilities are being rolled out to FDP first followed by the wider NHS.

Key presentation points:

• IQVIA is a global company that offers data, technology, and expertise to help life sciences organisations improve patients’ outcomes and accelerate healthcare transformation.
• To achieve the aim of making data available and accessible, to drive many important benefits and improvements in healthcare, it is critically important that NHS England ensures and assures the public that the data and people’s privacy are well protected.
• The PET solution supports four key outcomes for the FDP and wider NHS for safe sharing and access to health data across the NHS: Privacy, trust, interoperability, and transparency.
• The NHS-PET service catalogues data and associated policies, protects data with privacy treatments and audits data flows and treatment.
• PET is integrated with the FDP to provide auditability and to ensure that privacy treatments and protections ca be applied according to NHS Information Governance policies. Although the focus is on the FDP, PET is scalable across other data platforms.
• The users of PET would include DPO’s Caldicott Guardians, Information Governance Leads and members of Information Governance teams.
• PET does not store data beyond the audit logs, the information about the data flows, and the governance policies. PET registers the data flowing through and catalogues the policies. PET then, in accordance with those IG policies, is applying privacy treatments to the data where appropriate. The FDP then securely stores the data once registered by PET and provisions data access according to IG policies defined in PET. This provides a combined capability to assure privacy, trust, transparency and interoperability.
• PET will be implemented in three phases: Phase 1- data onboarding and registration, Phase 2- enhanced PET functionality, and Phase 3- Continued evolution and adoption.
• In Phase 1, PET is run as a managed service, so there is no demand on local Trust teams.
• In Phase 2, PET will empower trusts to use a full suite of data governance and privacy treatments capabilities for a wide number of use cases where data access might be needed. Advanced features and capabilities will be introduced, such as leak detection.
• In ongoing PET service, PET will continue to support and evolve to the data governance and privacy needs of NHSE as well as integration with other data platforms across the NHS over time.
• PET is hosted on an NHS dedicated UK AWS cloud environment.

IQVIA representatives opened the floor to members for comments and questions.

Key discussion points:

• The group discussed the importance of working towards engineering solutions that allow patients to easily access a view of their stored data. The group recognised this is a wider NHS point and not FDP specific. This point is also being picked up as part of the national deliberation regarding data. Members who are interested to input into initial discussions regarding this are to contact the wide scale patient engagement programme team
• The group asked for clarity on the functionality of de-identification and re-identification. The FDP Programme Delivery Director confirmed that the reidentification of data would only be available to the data controller where there is a specific need and only on the data controller’s request/instruction.
• The group agreed on the significant importance of communications going forward. This is particularly pertinent to supporting the public to be able to understand and be well informed on PET as a complex system. The group emphasised the importance of the use of visuals. The Head of Communications and Engagement advised that an easy-to-read guide for PET has been commissioned and assured the group that these forms one of a multi layered approach to providing accessible information to different depths of detail.
• The group asked what kinds of PET are being used, and the scope for expansion going forward to meet different needs. IQVIA advised that for treatments and protection for privacies, the specific PETs that are planned to be used are a wide range of transformation to the data such as pseudonymised data, de-identification, as well as differential privacy. Further ranges within transformation are available such as generalising data, date shifting, and targeted suppression. A broader spectrum is also available to support adoption and evolution. IQVIA emphasised the imp3ortant of the application of these in accordance with how the data will be used to ensure utility of data is preserved.
• The Information Governance Lead advised that the data controller remains in control at all times. Through the DPIA and IG process, the data controller sets out exactly what controls they want to put in and what treatments they want to have on that data as it moves into the
• The group discussed the timing of the PET phases and how they fit within the stages of the FDP roll out. The FP Programme Delivery Director outlined that the phase 1 integration is complete with the registration phase to commence. The programme will then go into transition phase which will take place between now and June 2024. PET treatments will then be available in the summer for use cases that require treatments.  In the summer, as part of the wider NHS piece, all pre-treated data that is currently treated by other mechanisms, will start to have IQVIA PET start to treat each of those flows which will take approximately 6 months to ensure management and safe transition. Confirmation that data that requires PET application will not be processed until PET is in place.
• The group discussed the ambition of PET and agreed on the importance of engaging with systems to understand the potential for expansion. This was discussed in the context of recognising the power of local ownership and engagement, understanding system operational model development, and beginning to scope further opportunities for integration in wider areas such as Secure Data Environment. The group also reemphasised the importance of communication in ensuring there is a good understanding of PET, in order for informed choices and support to be confirmed. The FDP SRO reminded the group that PET is not a one size fits all as systems, regardless of whether they are using the FDP, will be able to access this service.

The group were informed that, in the first instance, PET will register all data flowing into FDP and provide a clear audit functionality to show who has accessed data and for what purpose. The use of PET will evolve to also treat data and remove any identifiable information (de-identify) where and when required.  

The Chair thanked IQVIA for their presentation and reflected on the importance of communications going forward and recognition that PET applies to the whole NHS and not just the FDP.

The Head of Communications and Engagement agreed to bring the scoping, of an easy-to-read guide for PET, to the FDP Check and Challenge Group to input into.

Action: Members who are interested in inputting into the discussion on patient data access to contact the wide scale public engagement team. Action: Easy to read guide scoping phase to be brought to the FDP Check and Challenge Group

FDP-AS and PET Update

The FDP Programme Delivery Director provided an update to the group.

The programme has completed technical enablement, with the FDP and PET integration complete and the build of the FDPs full capabilities completed. End to end assurance testing, including external penetration testing, has also been completed. Integration into wider NHSE estates has taken place which includes Cyber, Cyber Security Operations Centre (CSOC), and Live Services Team to ensure appropriate monitoring of the platform is in place.

Local transition readiness is now completed which means teams are ready to commence onboarding and transitioning from the current use of the foundry platform to the FDP. This also includes teams working hard to address any technical debt.

The FDP programme team have been working to ensure the programme is ready for future demand as a key enabler to achieving adoption of the FDP in 71 trusts by the end of 2024.

The FDP programme team continue to work with FDPIG Group (which include external stakeholders)  and the Data Governance Group to review and approve FDP IG documentation in preparation of supporting the first wave of transition.

The FDP programme governance structure has been revised to reflect the needs of the programme as it moves into delivery phase. The FDP Check and Challenge Group is one of a number of advisory groups that feed into the FDP governance structure and ensure the FDP programme is taking on a wide set of advice to help shape and deliver the FDP.

In regard to the Spring Budget, the FDP has secured funding, and our aim is to focus on productivity benefits and how we will develop products across the NHS for productivity. For 2025/2026, when the funding is unlocked, this will allow the programme to move at pace for roll out and to support local organisations to adopt the FDP and achieve productivity benefits.

The Head of Communications and Engagement provided an update to the group on key FDP communications activities taking place.

The main focus at the moment is on transparency and building trusts and confidence. Members of the group will be made aware of the publication of the FDP-AS contract, FDP-PET contract, and IFDP IG documentation.

The FDP programme team have been updating and building out the FDP web content to aid understanding of the programme and to provide appropriate levels of detail as the programme progresses. The FDP programme team have also increased social media activity to signpost the public to the FDP public engagement portal and further information.

The FDP programme team continues to monitor opt-out levels on a daily basis, and these remain at a steady business as usual rate. Monitoring will continue. 

The FDP programme team continues to link in with the large-scale public engagement team and are also attending key events to increase FDP awareness.

The group queried the level of patient and public engagement due to take place. The Head of Communications and Engagement advised that the feedback received from the FDP public engagement portal will help shape the approach to public and patient engagement, with initial plans indicating a need for a national picture segmented by region. The Head of Communications and Engagement agreed to bring public and patient engagement plans to the group for review and feedback.

The group queried if the further publication of the FDP-AS and FDP-PET contract were in response to legal challenge. The FDP SRO assured the group that this is not the intention and explained that due to its size and complexity, commercial sensitivities, and data security, it was not possible to publish the contract as it will be done today, within the 30-day period NHS England is bound to publish contracts.

Action: Communications to be sent to FDP Check and Challenge members to notify them of the publication of the updated FDP-AS contract, FDP-PET contract, and FDP IG documentation.

Action: Head of Communications and Engagement to bring the proposed approach to public and patient engagement to a future FDP Check and Challenge Meeting.

Information governance update

The FDP IG Lead thanked the group for the feedback received from members, and for the attendance at the extraordinary FDP Check and Challenge meeting to review FDP IG documentation.

The MoU and DPIA are now out with the system as final version and are getting ready to be signed off via DocuSign. The overarching FDP IG Framework and FDP IG DPIAs have been updated to reflect feedback and comments received and are being reviewed for approval by the FDP Data Governance Group. The level two Privacy Notice has been shared with this group and the patient panel for comment and feedback.

The three wave 0 product Privacy Notices have also been shared with the Data Governance Group for review and approval, as well as the DPIAs and Annexes for those products.

The FDP programme team are now working on local product DPIAs and Annexes to be shared with the FDP Data Governance Group week commencing 18 March 2024.

All of the FDP IG documents are shared with the Specialist IG Group and System IG Group for stakeholder engagement at subject matter expert level, as well as being shared with the FDP Check and Challenge Group.

The FDP IG Lead took the group through a document which outlined the feedback that has been received on the IG documentation and how that feedback has been incorporated into the current versions of the IG documentation. The FDP IG Lead advised that this document can be built upon to add in feedback received from wider groups and took feedback from members to clearly articulate this document as being ‘live’ with a view on which documentation the feedback log includes.

The group queried if continued feedback is welcomed and helpful. The FDP IG Lead advised that the IG documentation is iterative and continued feedback is helpful and will help shape future iterations when required. The group discussed the need for communications to help the understanding of what IG is, how it works, and why documentation is iterative as a best practice mechanism as opposed to something that would cause uncertainty.

The group discussed the wording on opt-out application, with the IG documentation for the Antimicrobial Resistance product being used as an example where opt out is classed as not applicable but there is no data in this product for it to apply to.  The FDP IG Lead agreed to take this feedback back to the FDP programme team for consideration in future iterations. The Head of Communications and Engagement advised that a lot of discussions have taken place with difference groups to identify the best approach to describing opt-out application. Members were asked to contact the FDP programme team with any feedback on this discussion, with any resources to support reflection to be shared by the Head of Communications and Engagement.

Action: FDP programme team to share the FDP IG documentation feedback overview paper with the FDP Check and Challenge Group.

Action: FDP Check and Challenge members to send any feedback on opt-out narrative/description on application to the FDP programme team.

Any other business and close

The next meeting is due to take place on Friday 19 April.

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