Let's talk GP patient information

We need to hear from as many people as possible, with differing opinions, experiences, and backgrounds, to help shape the conversation about how GP patient information (also known as GP data) is used, as part of the GP Data for Planning and Research Programme.

GP patient information has the power to transform how the NHS provides care and treatment to patients; since the NHS was established in 1948, it has been using patient data, from GPs and hospitals to do just that. GP data is both powerful and sensitive, so it is essential that we listen to a wide range of people, understand their views and concerns, and work with them so that their voice informs how we use it. We also need help to make sure we talk about patient information properly and address peoples’ concerns. This is where we need your help.

We are currently looking for people to get involved, and share their views by taking part in the following paid opportunities:

We are committed to promoting equality and eliminating unlawful discrimination, and we are aiming to achieve diversity in the range of people we involve. We recognise that some groups are often underrepresented, therefore we particularly welcome applications from:

• people with a Black, Asian or Mixed ethnic background
• people living in the most deprived areas of England
• people with protected characteristics as listed in the Equality Act (2010)

Letting us know you’re interested in being involved is quick and easy:

Option 1: Join our patient and public panel

Tell us who you are by completing the short equalities monitoring form located below. This is important information to help us make sure that we have a broad range of people, with different views, backgrounds and characteristics, represented on the panel.

Tell us why you want to get involved, and what skills, experience or point of view you’ll bring to the conversation. You can either complete the expression of interest form, or send us an email or short video which contains the information requested in the expression of interest form.

Your completed monitoring form and your expression of interest (written or video), should be sent to:

Email: GPdata@NHS.net - please title your email ‘Recruitment’

Post: GP data recruitment, NHS Digital, 5th floor, 7&8 Wellington Place, Leeds, LS1 4AP

Option 2: Join our engagement pool

Your completed monitoring form should be sent to:

Email: GPdata@NHS.net - please title your email ‘Recruitment’

Post: GP data recruitment, NHS Digital, 5th floor, 7&8 Wellington Place, Leeds, LS1 4AP

Option 3: Register an interest in the Panel and one-off activity

If you would like to express an interest in both engagement opportunities, please follow the directions for option one, and tick the relevant box on the first page of the expression of interest form – you do not need to send two separate expressions of interest.

If you have any questions, or would like to discuss the opportunities, please contact Lucinda and Lorna at GPdata@nhs.net. Please title your email 'Recruitment'.

1. We will acknowledge receipt via email. 
2. Expressions of interest for the patient and public panel will be reviewed against the skills, experience, attributes, and expressions of interests submitted, and considered alongside the monitoring form to ensure the panel is representative or a range of views, backgrounds and characteristics. 
3. Everyone who expresses an interest in either opportunity will be notified about the outcome.
4. If you have expressed an interest in joining the patient and public panel, you may be invited to have an informal conversation as part of the selection process. This is not an interview, and you are not expected to prepare for it.
5. If you are recruited to either opportunity the next steps will be confirmed in future communications.

Thank you for your interest in these engagement opportunities.

Before submitting your expression of interest, please consider the necessary skills, experience and attributes required.

Please submit only one application form for each person applying. You can either apply yourself, or on behalf of another person (with their agreement).

Please complete and return this application form, along with the Equal Opportunities Monitoring Form to GPdata@nhs.net.

Please write ‘Patient and public voice recruitment’ in the subject line of your email.

Every time patients come into contact with the NHS, there’s an opportunity to learn a bit more about the nation’s health and about the NHS services we provide. By safely and securely collecting and analysing this information across all patients, we could build up a detailed picture which will help us to research new treatments, deliver the right services and improve the NHS.

The use of GP patient information (also known as GP data) for planning and research has the power to transform our understanding of what causes ill health and, importantly, what we can do to prevent or treat it and provide better care.

While the benefits are well understood, using GP data for planning and research is a sensitive area. It is crucial that patients and the public understand that they have choices about the way their data is used, and we must be transparent about the safeguards we have put in place to keep data safe.

When the GP Data for Planning and Research (GPDPR) programme launched in spring 2021, it was met with concern from some patients, public and professionals about what security and controls on access to data would be put in place. Such was the level of concern, it prompted a redesign of the programme to address the issues raised and to meet the conditions subsequently set out in a letter to GPs from Jo Churchill MP, the then Parliamentary Under Secretary of State for Primary Care and Health Promotion.

We have organised ourselves around three key areas of work:

1. Communications

This workstream is focused on making sure we have an ongoing conversation with stakeholders and the public about patient data and ensure we learn from feedback and use it to shape our approach at each stage.

2. Data management, access and governance

This team is working on the Trusted Research Environment and other aspects of the programme that focus on how data is processed, accessed and kept secure.

3. Opt-outs

The programme must meet the commitment to reduce the burden of ‘Type 1’ opt-outs on GPs and practice staff. This workstream is engaging with the profession to identify ways to achieve this, while also providing a good customer experience for anyone who chooses to apply a ‘Type 1’ opt-out.

We are absolutely committed to improving the use of GP data for planning and research in an open, transparent, and inclusive way. The voice of the public and stakeholders is being used to shape how we progress at every stage.

We will only move toward data collection when we are confident that we have met all the terms in the minister’s letter.

Earlier this year we undertook public research, in the form of a survey and focus groups, to explore and understand public awareness, perceptions, and the messages that might resonate most in future communications relating to the use of GP data for planning and research. You can see the findings of the survey in our Public survey summary report - General Practice Data for Planning and Research (GPDPR) and can read the wider ‘listening phase’ report in our General Practice Data for Planning and Research (GPDPR) Listening phase report.

Further background reading about the programme, and details about the assurance groups in place to support it, can be found on our General Practice Data for Planning and Research (GPDPR) page.