Action notes - Thursday 11 April 2024

Date: Thursday 11 April 2024

Time: 9:30am to 11:00am

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.

GP Data Lead moved to Data for R&D Programme from w/c 08/04/2024. New NHS England Project Manager supporting meetings and invoicing arrangements moving forwards.

Layla Heyes taking over from Eilleen Phillips to represent the Office of the National Data Guardian.

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

The action notes from the previous meeting were approved for publication with a correction to lay members name, and no conflict of interests were raised.

Public Engagement Exercise

Amend to discussion of stimulus pack for the large scale engagement, ensuring public are well informed for phase 1 of deliberations.

3 cohorts of engagement in 24/25 and 3 types of methodology to engage public- core deliberation, inclusive engagement and quantitative polling.

Discussion of sampling approach- utilised to capture rural, coastal and city areas within cohorts. Locations selected to ensure representation of diversity across England and letters shared within specified radius around hubs to ensure easy access. Consideration was also given to other factors such as ethnicity, guided by literature review. DHSC Stakeholder and Public Engagement Lead to share information on location selection process.

Data for R&D funding regional public engagement work relating to the SDEs, working closely to ensure co-ordinated engagement. Chair shared map of SDE regions where further engagement will take place.

Covered prioritisation of topics- one key consideration was policy timelines. Placed topics in order of where public would have most influence.

Discussion of progress on public engagement and next steps. Covered what information NHS England and the Department for Health and Social Care needs to give the public to aid understanding and so that they can provide informed recommendations.

Strong stimulus packs to be produced (optional pre reading materials to aid understanding before asked to make recommendations or contribute to discussion) so that members of the public feel informed on making decisions.

Feedback:

• Ensure stimulus pack is in different formats to match learning styles and ensure it is their data and that they have influence.
• Important to outline benefits to sharing data and differences between different types of data. Cover what data is and how data sharing enhances patient outcomes.
• Understanding Patient Data has useful animations on data.
• How will we assess risks? Will cover areas such as cyber attacks and provide space for sharing of concerns re sharing data. Ensure not influencing recommendations based upon biased information.
• MHM shared link to data literacy short course from Datamind.

Discussion on how much detail to go into on data law. Important to cover as and where appropriate for reassurance purposes of safeguarding data such as duty of confidentiality and ethics.

Queries on how to discuss profiting from use of patient data. NHS Greater Manchester Trust have SDE in place, following discussions general opinion is if private sector organisations are involved and stand to profit from accessing patient data a percentage should be given back to holding NHS trust with safeguards in place. Do not anticipate objections where there are clear benefits to NHS and safeguards are in place.

‘Commercialisation’ discussion should centre around concept of fairness and use wording of 'value'.

Health Innovation Manchester hosted by Manchester NHS Trust have 6 weekly meetings on topic of SDEs to engage with members of the public. One issue is due diligence- where they have external parties requesting access to data, they must ensure their intentions and safeguards are scrutinised.

Consider issues people who provide consent for others may wish to discuss.

Explanations support to address controversial news publications regarding data sharing.

DHSC Stakeholder and Public Engagement Lead to incorporate feedback into stimulus packs to share at next meeting.

Network Organisation and User Validation Policy

Presenter- Director for R&D Informatics at Oxford University Hospitals NHS Foundation Trust and Director, Thames Valley and Surrey NHS Secure Data Environment

Aiming to come up with network wide organisation and user policy for validation of organisations and users that wish to work within the SDE network.

Aim for go live April 2025 therefore one year to implement as soft launch involving testing with patients, public and data subjects.

Covered simplified user journey showing how to access information on data they hold in the Thames Valley and Surrey SDE. Not patient identifiable data. Discussed process flow for users to be able to browse catalogue and raise requests for data services.

Looking into IG training module for any organisation using network.

Covered proposal for consideration on excluded users, organisations and terrorists- they will not work with these individuals due to risk of bringing network into disrepute. Take strawman and testing to patients and public.

Feedback:

• Concept of pseudonymised data can be confusing to members of the public as are the circumstances where re-identification may be required.
• Can be difficult to explain why output checking is needed when they have been informed data was not identifiable.

Communicated struggle with the scale of projects utilising the secure data environment and ways in which to continue with a robust scrutiny approach.

Presenter clarified that this area of work might move from the Data for R&D Information Governance Community of Practice to the PPIE Community of Practice going forwards.

AOB

None to raise