General Practice Data for Planning and Research (GPDPR)

Patient data is already being collected to improve health and care services. For example, data from GP records was used to help identify and protect those most vulnerable to COVID-19 and prioritise the people who needed to receive their vaccine first. This was difficult to achieve because GP data is collected in many different ways and these systems are out of date. A single, secure system would have allowed us to identify vulnerable people faster and with much less effort from GPs.

We are developing a new, more secure and more efficient way to collect this data, called the General Practice Data for Planning and Research data collection.

During the summer of 2021 substantial public, patient and professional concerns were raised about the changes we were proposing to improve the control, security, and consistency of access to data from general practice (GP). Many of these people, including GPs, also think that in the past these concerns had not been listened to or fully understood. We, as a health and care system, have an opportunity through this new GP data collection, ‘GP Data for Planning and Research’ to do much better.

We know we need to listen, understand, engage and act on what we learn to get this right, and we are committed to doing so. We are redesigning the programme from the ground up and are spending time working with partners such as, health and care professionals including the Royal College of GPs, research organisations and patient charities, data experts and the National Data Guardian, patients and the public to establish how best to address the concerns raised. We have listened to some critical feedback and we promise to work more closely with our partners to make sure they are confident that data is kept secure, the workload for general practice staff is reduced so they can concentrate on patients, and to communicate better with everyone. 

We do not have a set start date for this collection and will only do so when we, and our partners, are confident that we have engaged, listened, learned and made changes as a result.

We will only begin to collect data when: 

• the British Medical Association (BMA), Royal College of General Practitioners (RCGP) and the National Data Guardian (NDG) are satisfied with the proposed arrangements - they are working with us as part of our Check and Challenge Group and will be key partners throughout the design process
• an effective, secure computing environment (known as a Trusted Research Environment) has been developed to allow approved researchers to access data they have applied for, without it ever being copied or moved outside the security of the NHS 
• any previous data collected through the GP Data for Planning and Research collection can be deleted at any time if people choose to opt-out of sharing their GP data with us
• people are more aware of the new data collection process as a result of wider engagement and communication

Data about patients has been used for over 40 years to develop new treatments for disease, to make sure that local communities have the health services they need and to plan national services, for example to make sure that we train the right numbers of doctors and nurses, and that hospitals are seeing cancer patients within two weeks of being referred by their GP, or if patients with diabetes are receiving the vital checks that help to manage their condition.

The system that collects GP data is over 10 years old and needs to be replaced. The new service replaces 300 individual collections with one single collection. This is more efficient, with stronger privacy protections for the data at all stages and reduces the burden on general practices. For these reasons we are developing a new way to collect this data, working with general practice, patients and the public and data experts, to develop a solution which is safe, trusted and which maintains privacy. This project is called GP Data for Planning and Research.

The General Practice Data for Planning and Research programme has developed a four-phase communication plan which will: 

1. Listen to people’s views and concerns 
2. Engage and involve the public, patients and health professionals in shaping the approach
3. Demonstrate how we have responded to what we have heard 
4. Ensure the public is well informed about the improvements. 

Here you’ll find more detail on how we’re working to deliver on these commitments.

Listening

We will listen to a wide range of people to gather views and understand their needs and concerns, building on the valuable information that has previously been shared with us. This will be used to inform the policy decisions, technology, processes, and our engagement and communications activity. 

We have already developed a number of assurance groups to enable us to regularly meet with interested parties and to check our thinking as the programme develops. These groups will publish action notes and you can learn more about their Terms of Reference and membership on the dedicated pages.

We are always open to feedback as we develop the programme and anyone can contact us via enquiries@nhsdigital.nhs.uk to give their views.

Engagement

We will run a series of events offering opportunities to talk with a broad range of people, such as patients and GP practice staff. We will explain the data collection, answer questions, and work together to ensure that what the programme develops meets their needs.

Demonstration

We will show how the feedback we have gathered during both the Listening phase and the Engagement phase has been used to help design the technology, processes, and communication materials.

Delivery

The new systems and processes that we have developed, informed by the earlier phases, will be launched. These will be supported in advance by information for NHS staff and the public about the data collection, their right to opt out, as well as how to change their choice if they wish to.

We have not set fixed timescales for each phase because the lessons learned in each one will need to shape the next. We are currently planning the listening phase and will publish further information about this shortly. We will ensure that we reach people from different backgrounds, including those that are digitally excluded.

We will provide regular updates about our work to make sure that people are informed about our progress and how they can get involved. 

See regular updates from the assurance groups here:

• GP Data Check and Challenge Group
• GP Data Patient and Public Engagement and Communications Advisory Panel
• Information Governance Expert Liaison Group

We also publish regular blogs about the programme, which you can read here:

• Your NHS data makes a difference

Put simply, data is at the heart of our NHS. You can’t see it, but it is essential to the way that we plan and run services and to the way that doctors, nurses and other health professionals give individual care. 

It is easy to see how your doctor needs to know about your medicines to be able to safely look after you, but some other examples which you might not have thought of, are below.

Planning and running NHS services 

NHS organisations need data to help them plan and run NHS services safely and effectively. This could include deciding where to provide new clinics and GP services or protecting public health, such as managing and monitoring the coronavirus pandemic.

When pooled together, data held in general practice patient records provides a detailed picture of the nation’s health. It offers the most reliable evidence on which to base decisions on healthcare planning and delivery.

It means services, staff and funding can be allocated to where they are most needed, enabling healthcare staff to provide the highest quality care to their patients.

Data for research 

Patient data collected from general practice is needed to support a wide variety of research and clinical trials, helping to develop cures and treatments for serious illnesses, such as heart disease, diabetes, and cancer and examining the effectiveness of new medicines.

For example, GP data collected as part of the COVID-19 response is being used by the University of Oxford RECOVERY trial, which is looking to find ways to improve the treatment for people with COVID-19.

This research is only as good as the data it is based upon. Being able to safely and securely access this data in one place will help improve the quality of researchers’ results and new and improved treatments will reach patients more quickly.

Contributing to research projects will benefit us all as better and safer treatments are introduced more quickly and effectively without compromising patients’ privacy and confidentiality.

We have rigorous processes in place to ensure that data we manage is collected, processed and stored securely. We also have strict governance processes in place to ensure we only provide controlled access to data to organisations that can clearly demonstrate how the data will be used for public benefit.

Patients can opt out of their data being shared, with more information available here.

Any patient data that is collected as part of the GP Data for Planning and Research collection will only be used for health and care purposes. Patient data is never shared for marketing, insurance or any other solely commercial purpose. This is protected in law.

We continue to engage with the British Medical Association, Royal College of General Practitioners and the National Data Guardian to ensure all relevant safeguards will be in place for patients and GP practices.

Trusted Research Environment (TRE) is a new and secure way to provide approved researchers with access to the data they need for ethically and legally approved research projects. The data is accessed in a secure location rather than being downloaded and is de-identified to make sure that patients cannot be identified.

The use of the data is tracked and no data can leave the secure environment, providing greater assurance that sensitive data is handled securely.

Organisations requesting controlled access to this data must have a specific reason to need the data which benefits health and care, and a clear legal basis for access. Only the minimum amount of data needed to meet the specific purpose will be accessible.

We will not develop our TRE alone and we know that we need to take on board the views of clinicians and data experts. We will seek advice from the Independent Group Advising on the Release of Data (IGARD) and from the GP Profession Advisory Group (PAG) to make sure that the highest standards of governance are upheld. Information about all of the data that we have shared since 2012 is published in our data uses register.

We will never approve requests to access data where the purpose is for marketing purposes, including promoting or selling products or services, market research, insurance or advertising or any other solely commercial purpose. Find out more about how we make decisions about data access, including the independent experts that we ask for advice.

More information about TRE can be found on the Understanding Patient Data website.

The General Practice Data for Planning and Research Direction, Data Provision Notice, Privacy Notice and Transparency Notice have been taken down subject to further review. No action is required by GP practices or GP system suppliers in response to them.

We will develop new versions of these documents which will be informed by the views we hear during the different phases of our work.