Could you co-chair a working group on the use of health and social care data?

What are Sub-National secure data environments (SNSDEs)?

SNSDEs are NHS-led and bring together Integrated Care Boards with local universities and industry partners to build on existing collaborations and successful research partnerships within 11 regional locations.

What will be involved?

The working group will:

• develop and reinforce public involvement standards expected of the SNSDE development teams through a series of position statements
• work with RECs and the CAG to agree position statements on acceptable and consistent approaches to using patient data
• work with SNSDEs to inform their public involvement, transparency, and diversity standards

The working group will work online and communicate regularly via email to agree position statements for meetings.

Meetings will take place approximately every three to six weeks between August and December 2023.

You’ll be asked to read materials and provide your comments, thoughts, and insights between meetings.

You can find out more on the NHS England website.

What difference will it make and how will I know?

We’ll work together to discuss and directly influence the development of the standards for teams developing SNSDEs, including public involvement, to help earn public trust in data research.

This guidance will be shared directly with the teams developing SNSDEs. This will ensure public involvement is a key priority from the very beginning.

What support will I receive?

We have a small team at the HRA who will support your involvement throughout this project.

Your HRA point of contacts will be:

• Gemma Warren gemma.warren@hra.nhs.uk
• the data and AI team data.ai@hra.nhs.uk
• Barbara Molony-Oates public.involvement@hra.nhs.uk

Before the working group starts, Gemma and Barbara will send briefing documents and set up a meeting for you to ask us any questions and discuss how to work well together. A member of the HRA team will be available after meetings should any questions, comments or concerns come up for you.

Captions will be enabled for all Zoom meetings. Meetings over one hour will have a scheduled 10-minute break. We’ll send you information about all the meetings one week in advance by email. If you would like a short conversation with a member of the project team or the HRA’s public involvement team before meetings, then we can arrange that.

Once selected, we’ll invite you to share your access and support needs and any reasonable adjustments required. We will keep this information confidential. With your permission, we will share it with the HRA staff you work with.

What skills or experience do I need to take part?

We think it is important that you meet these criteria:

• you’ll have experience of chairing events and are comfortable taking part in and chairing virtual meetings over Zoom. You have experience of leading inclusive and impactful meetings, balancing the need to create space for people with different perspectives and from different backgrounds to challenge constructively, with the need to make sure that the meetings are productive and kept on time
• you’re confident using email, reviewing documents electronically and attending and chairing remote meetings. We can provide IT support and equipment if you need it. Some knowledge of the issues relating to data security would be appreciated but is not a requirement
• you have a good understanding of the concerns that different groups, and the public more widely, have about data being used for research
• you have a good understanding of the issues surrounding the need to ensure that the data used in research includes data from marginalised and underserved people and communities and the data used is inclusive of protected characteristics and representative of the whole population
• familiarity with the health and social care research regulatory landscape and will be confident working with teams developing SNSDEs, senior researchers and policymakers.
• you have an understanding of the requirements to link data and create systems to harness data for research efficiently and safely

We’re committed to creating an inclusive workplace that promotes and values diversity. We know from experience that different ideas, perspectives and backgrounds create stronger, more creative ways of working, that help us to achieve the ambitions in our strategy. We welcome applications which represent the rich diversity of our community: age, disability, gender identity and expression, ethnicity, impairment, neurodiversity, religion or belief, sex, sexual orientation and other diverse life experience such as being a carer, level of education, living in a deprived and / or rural area, and socio-economic background.

How will you decide who will be involved?

We’ll remove your name from your application. Two members of the HRA staff will score what you have written against the criteria. We’ll use these scores to draw up a shortlist for the role of co-chair and will then meet with the shortlisted candidates for a short interview to select the co-chair.

Will I receive payment?

In line with our policy, we can offer a fee of £75 per meeting to cover preparation, taking part in the meeting and feeding back on the notes.

Additional work undertaken by the co-chair requested by us will be reimbursed according to our payments policy, for example brief pre-meets with the co-chairs ahead of meetings.

Will my expenses be covered?

Yes. You won't need to travel but if you have any other expenses (for example, printing, carer’s costs), we will cover all reasonable expenses. We offer £5 to cover any incidental expenses for attending online meetings.

Who do I contact for further information?

Please contact Barbara Molony-Oates, Public involvement manager on Public.Involvement@hra.nhs.uk or on 0207 104 8161 if you have any questions.