Action notes - Thursday 25 April 2024

Date: Thursday 25 April 2024

Time: 9:30am to 11:30am

Location: MS Teams Dial in

Attendees

Agenda items/minutes/action notes

Introductions

Panel members were welcomed to the meeting by the Chair, who also ran through the agenda.

Review of previous meeting’s action notes and declaration of interest

The action notes from the previous meeting were approved subject to a title change for one of the members.

No conflict of interests were raised.

NHS Federated Data Platform (FDP) Programme Update

The Head of FDP Communications presented an FDP programme update.

Information governance information have been published on website and NHS FDP content updated and expanded. The panel were invited to provide any feedback on the information published on the website.

An exercise to review Privacy Notices will take place at the next meeting.

The programme is now in a transition phase, the transition of national products has begun to the national instance of the NHS FDP and preparation activity is taking place with local trusts (who had been pilot sites) to support their transition to local instances of the NHS FDP.

The panel were reminded that information governance is key to the protection of patient confidentiality and information. Information Governance specialists and stakeholders from the Check and Challenge group have supported development of this documentation.

The target is to have 71 sites live with a local instance of the NHS FDP by the end of 2024. Engagement activity is taking place to support the demand generation.

ACTION: Privacy Notices exercise to be added to the agenda for the next meeting - 9 May.

Engagement

Large scale public engagement activity due to start May 2024, incorporating programme requirements and ensuring relevant FDP examples are included to support discussions. Alongside this the NHS FDP programme will carry out NHS FDP specific engagement.

An easy read guide is being developed for the NHS Privacy Enhancing Technology, and feedback will be captured from the PPECAP later on the agenda.

Privacy Enhancing Technology (PET)

A programme lead from IQVIA presented an overview of NHS PET solution to the panel, explaining how it would be used now and in the future, and the additional functionality it provides to the NHS.

Examples of the different treatment options was presented to support the discussion.

Key points of feedback from the discussion were:

• Explain the reasons that different treatment options would be used and why.
• Communicate the additional functionality that NHS PET provides over and above existing privacy solutions.
• Explore more meaningful language than using the term 'treatment' - 'type of process' was suggested as an alternative.
• The panel suggested it would be useful to include definitions of different types of treatments, their purpose and when they might be used. Panel suggested including this information on the FDP website.

The panel were thanked for their questions and feedback, much of which will also help inform the Plain English guide to NHS PET.

ACTION: Share presentation slides following session.

Feedback on the PET content

One of the FDP comms managers presented the PET Plain English Explainer document, which had been provided to members for review ahead of the meeting. The late circulation of this information was noted, and apologies made for this. Feedback was also welcomed via email outside of the meeting.

ACTION: project support to circulate pre-reading and materials 1 week in advance of the PPECAP panel meetings.

The Panel reported positive feedback on the document, feeling it was clear and written in plain English. Some minor amends were suggested which included:

• the replacement of the word ‘anonymised’.
• include examples
• replace the word 'perhaps' with example of circumstances where data may be used for purposes beyond individual direct care.
• Where reference is made to the fact that 'rules are set by specialists' this could infer clinical specialists e.g., consultant. Recommendation to replace with 'experts'.
• The panel suggested a final summary sentence be added that demonstrates the benefits for patients i.e. an 'enhanced mechanism to protect data'.

The panel were thanked for their feedback, which will now be used to finalise the content.

Stimulus Pack Review

Senior Data Policy Advisor from DHSC presented the revised stimulus pack. General feedback shared around formatting and ease of digestion.

Query raised around the location of workshops. Clarified that 120 participants will attend all workshops. This has been funded and agreed with participants.

Suggestion made to expand upon the benefits of improved data for adults in need of social care.

The panel made a suggestion to achieve a greater balance of information on the risks and benefits. Another potential risk raised was that individuals may not know how their data is used and for what purpose.

The panel commented that the embedded video was visually distracting as the writing was not in sync with the audio and speed of talking was not accessible.

The panel fed back that browsing and purchasing history might not be representative of the individual.

The panel felt it would be useful to understand what interaction will occur in the room during the presentation to collect useful information from participants. Clarified that there will be facilitators on each table, break out rooms after each key point, policy leads available to inform discussion. There are discussion guides that will sit alongside stimulus packs.

ACTION: DHSC to circulate discussion guides next week for information.

Suggestion to draw out benefits of advancements in NHS data as a case study to improve situation for those with long term health conditions.

Any other business

The panel requested that information is sent in a timely manner ahead of each meeting.

Panel reminded that deadline for payroll for April timesheets is 3 May however advised that support is currently in place throughout April for submission of timesheets. Independent members therefore asked to submit timesheets by CoP 26 April where possible.

The panel to inform the Chair of agenda items to be included at the next meeting.