Your Data Matters - Data Sharing with NHS Digital

On the 12th May, NHS Digital issued a Data Provision Notice to GPs to enable GPDPR to begin from 1 July 2021 with the aim of giving planners and researchers faster access to pseudonymised patient information.

Concerns have been raised about the timeframes and whether enough time has been given to inform patients about the changes. Therefore, NHS Digital has said that to ensure that more time is allocated to speak with patients, doctors, health charities and others to strengthen the plan even further, the collection of GP data for planning and research in England would be deferred from 1 July to 1 September 2021.

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What is the GPDPR?

With lots of information coming out on social media and in the news about the National Data Opt-out and the General Practice Data for Planning and Research data collection, we want to give patients the information they need to help make informed choices about their care.

Patient data from GP medical records kept by GP practices in England are used every day to improve health, care and services through planning and research, helping to find better treatments and improve patient care.

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

The NHS is introducing an improved way to share this information – called the General Practice Data for Planning and Research data collection.


Under the improved scheme, the NHS would collect data about:

✅ your sex, ethnicity and sexual orientation

✅ clinical codes and data which would include diagnoses, symptoms, observations, test results, medications, allergies, immunisations, referrals and recalls, and appointments, including information about your physical, mental and sexual health

✅ staff who have treated you


The NHS will not collect:

❌ your name and address (except for your postcode in 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

The NHS will not:

❌ Sell your data

❌ Use your data for marketing, market research or advertising


If you do not want your identifiable patient data to be shared outside of your GP practice for purposes except for your own care, you can register an opt-out with your GP practice by 23 June 2021 which can be found in the links below. You can download the opt out form by clicking here. Patients without internet access can call 03003035678.

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. More information can be found here.

We encourage patients to make informed decisions about their health and care and want to reassure patients that whether you decide to opt out or remain opted in, your care with the surgery will not be affected.

For more information and the opt-out forms you may need, please visit:

 



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