GDPR and National Data Opt Out
General Practice Data for Planning and Research (GPDPR)
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 has developed a new way to collect this data, called the General Practice Data for Planning and Research data collection.
The new data collection reduces burden on GP practices, allowing doctors and other staff to focus on patient care.
Why NHS Digital collects general practice data
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.
NHS Digital collected patient data from general practices using a service called the General Practice Extraction Service (GPES), which has operated for over 10 years and now needs to be replaced.
NHS Digital has engaged with doctors, patients, data and governance experts to design a new approach to collect data from general practice that:
- reduces burden on GP practices
- explains clearly how data is used
- supports processes that manage and enable lawful access to patient data to improve health and social care
What data is shared
This data will be shared from 1 July 2021. 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 July 2021, and was previously registered at a GP practice in England when the data collection started
NHS Digital will not collect patients’ names or addresses. Any other data that could directly identify patients (such as NHS Number, date of birth, full postcode) is replaced with unique codes which are produced by de-identification software before the data is shared with NHS Digital.
This process is called pseudonymisation and means that patients will not be identified directly in the data. NHS Digital will be able to use the software to convert the unique codes back to data that could directly identify patients in certain circumstances, and where there is a valid legal reason.
We will collect structured and coded data from patient medical records.
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 does 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
Opting out
If you don’t want your identifiable patient data to be shared for purposes except for your own care, you can opt-out by registering 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)
We 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 is in our GP Data for Planning and Research Transparency Notice, including a form that you can complete and send to your GP practice.
This collection will start on 1 July 2021 so if you do not want your data to be shared with NHS Digital please register your Type 1 Opt-out with your GP practice by 23 June 2021.
If you register a Type 1 Opt-out after this collection has started, no more of your data will be shared with us. We will however still hold the patient data which was shared with us before you registered the Type 1 Opt-out.
If you do not want NHS Digital to share your identifiable patient data with anyone else for purposes beyond your own care, then you can also register a National Data Opt-out.
Printable Opt Out Form– Sign and return to Perranporth Surgery
National Data Opt-out (opting out of NHS Digital sharing your data)
We 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 our GP Data for Planning and Research Transparency Notice.
National Data Opt Out Programme
The 25th May 2018 saw the introduction of the NHS 'National Data Opt-Out programme'; this is a service that enables data subjects to opt out of having their data shared for research and/or planning purposes. NHS Digital will be automatically converting patients' existing type 2 objections to the new op-out from May 2018.
Our patients do not need to take any action, and this will not affect the way your information is used. We are continuing to respect your original choice to not share confidential patient information beyond NHS Digital for research or planning, but your choice will recorded as a national data opt-out rather than a 'type 2 objection'.
Every patient who is now aged 13 or over with a type 2 objection recorded will receive a personal letter explaining the change. The letters wil be issued from June 2018 and will include a handout which explains more about the scheme. The letter will ask patients to contact NHS Digital should they have any questions.
Below is a useful link for patients from NHS Choices called 'Your NHS Data Matters' click on the logo for more information. The second link is a leaflet provided by the NHS - copies are available at the surgery.
Your NHS Data Matters Leaflet