In a letter to all GP’s on 19th July Minister for Primary Care and Health Promotion, Jo Churchill set out a new process for commencing data collection, moving away from a previously fixed date of 1 September.
What are the 3 tests that must be met?
- The ability for patients to opt out or back in to sharing their GP data with NHS Digital, with data being deleted even if it has been uploaded, and outstanding opt outs being processed.
- A Trusted Research Environment is available where approved researchers can work securely on de-identified patient data which does not leave the environment, offering further protections and privacy while enabling collaboration amongst trusted researchers to further benefit patients.
- A campaign of engagement and communication has increased public awareness of the programme, explaining how data is used and patient choices
Why would the NHS want to share patient data?
The data held in the GP medical records of patients is used every day to support health and care planning and research in England, helping to find better treatments and improve patient outcomes for everyone.
NHS Digital is the national custodian for health and care data in England and has responsibility for standardising, collecting, analysing, publishing and sharing data and information from across the health and social care system, including general practice.
What the data will be used for?
The data collected is used to help support the planning and commissioning of health and care services, the development of health and care policy, public health monitoring and interventions (including coronavirus (COVID-19) and enable many different areas of research, for example:
- Research the long-term impact of coronavirus on the population
- Analyse healthcare inequalities
- Research and develop cures for serious illnesses
What kind of patient data is shared?
This data will be shared from 1 September 2021 unless you choose to opt out. Data may be shared from the GP medical records about:
- any living patient registered at a GP practice in England when the collection started - this includes children and adults
- any patient who died after 1 September 2021, and was previously registered at a GP practice in England when the data collection started
NHS Digital will collect:
- data about diagnoses, symptoms, observations, test results, medications, allergies, immunisations, referrals, recalls and appointments, including information about physical, mental and sexual health
- data on sex, ethnicity and sexual orientation
- data about staff who have treated patients
NHS Digital will NOT collect:
- name and address (except for postcode, protected in a unique coded form)
- written notes (free text), such as the details of conversations with doctors and nurses
- images, letters and documents
- coded data that is not needed due to its age - for example medication, referral and appointment data that is over 10 years old
- coded data that GPs are not permitted to share by law - for example certain codes about IVF treatment, and certain information about gender re-assignment
Can I opt out of my data being used?
Yes, if you don’t want your GP records to be collected or shared, you are able to opt out. You can find all the details for opting out here:
You will need to register a Type 1 Opt-out or a National Data Opt-out, or both. These opt-outs are different and they are explained in more detail below. Your individual care will not be affected if you opt-out using either option.
Type 1 Opt-out (opting out of NHS Digital collecting your data) – What does it mean?
NHS Digital will not collect data from GP practices about patients who have registered a Type 1 Opt-out with their practice. More information about Type 1 Opt-outs can be found here including a form that you can complete and send to your GP practice.
National Data Opt-out (opting out of NHS Digital sharing your data) – What does it mean?
NHS Digital will collect data from GP medical records about patients who have registered a National Data Opt-out. The National Data Opt-out applies to identifiable patient data about your health, which is called confidential patient information.
NHS Digital won’t share any confidential patient information about you - this includes GP data, or other data we hold, such as hospital data - with other organisations, unless there is an exemption to this. To find out more information and how to register a National Data Opt-Out, please read this notice.
Healthwatch England Response
Responding to the announcement today by Jo Churchill, Minister for Primary Care, on the Government’s plans around GP data, four leading patient groups – Healthwatch England, National Voices, the Patients Association and the Richmond Group of Charities – have released the following statement:
“We welcome today’s move by the Government to extend the deadline for the GP data opt-out and allow NHS Digital and colleagues across the NHS, particularly those in primary care, to have the time and space to engage properly with patients and the wider public on these plans.
“In previous engagement work the public have told us that they are in favour of the NHS using their data for medical research if they understand how this information will be used and can opt out if they so wish. However, ongoing public support for this depends on complete transparency and clear communication from the NHS when things change.
“Over the next few months we need to see a proper nationwide campaign on this, reaching out to people so they can make an informed choice about how their own individual medical records are used to support research. This is a complex issue, and so we will all be working with the NHS to help build awareness and understanding.”
Information for patients in different formats:
Includes video, audio, braille and information in a variety of different languages about the scheme.
Your rights over your patient data
You can read more about the health and care information collected by NHS Digital, our legal basis for collecting it and your choices and rights in:
Healthwatch England collected the views of over 2000 people and found:
- Many people have heard about plans to use patient data.
The controversy and subsequent media coverage have led to very high awareness of the programme, with 57% of our 2,005 respondents saying they had heard about the plans.
- There is a lot of misinformation out there.
When we tested the official NHS Digital animation explaining the plans, only 40% of those aware of the programme said it matched what they had previously understood to be happening.
- People still largely trust the NHS with their data.
83% of people rated it as either ‘very’ or ‘moderately trustworthy’ when asked if they thought health service would keep their data safe. However, this has fallen from 92% from similar research we did in 2018.
- Willingness to share data appears to have dropped considerably.
Only 53% of people said they were happy to share their data to support planning and research. This roughly compares to 73% found during our study in 2018.
- People are not necessarily actively against their data being used. Almost a third (29%) of respondents said they were undecided about whether to opt out or not of the latest plans. In 2018, when we asked a similar question, only 16% were unsure.
- There is a lack of confidence that companies will be held accountable if they misuse data.
Over half of respondents (54%) said they were not confident that companies that misuse data would be fined appropriately. Yet 46% said they would be less likely to opt-out (i.e. more likely to share their data) if this was addressed.
You can read more here