Opt-out of GP Patient Data Collection – extended until September 2021

A project which allows patients to opt out of having details of their GP medical records shared for health research and planning has been extended, meaning patients now have until September to opt out.
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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

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:

https://www.nhs.uk/your-nhs-data-matters/

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.

https://digital.nhs.uk/services/national-data-opt-out/supporting-patients-information-and-resources

 

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:

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