General Practice Data for Planning & Research
Coded health data held in GP systems from your medical records will be uploaded to NHS Digital from 1st July unless patients opt out of this before 23.06.2021:
08.06.2021 UPDATE: The Medical Records upload will now commence on 1st September to allow more time for NHS Digital to explain what's intended to patients.
This is a legal requirement for practices and both the British Medical Association and the Royal College of General Practitioners have called for improved communication with the public from NHS Digital on how their medical information will be used for Planning & Research with non-NHS sources.
The National Data Opt-Out will not apply to the collection of this data by NHS Digital, as this is a collection which is required by law, however it will be applied by NHS Digital on access or dissemination of data.
Data that will be shared:
- data on sex, ethnicity and sexual orientation
- clinical codes and data about diagnoses, symptoms, observations, test results, medications, allergies, immunisations, referrals, recalls and appointments, including information about your physical, mental and sexual health
- data about staff who have treated you
What will not be shared:
- your name and address (except 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 we are not permitted to share by law - for example certain codes about IVF treatment, and certain information about gender reassignment
Opting out of this process will not affect your direct medical care, nor will it affect the sharing of your records to allow professionals treating you to have access to your relevant information. Opting out will not affect your use of the NHS App.
You can opt into the process later on if you feel you would like your data to be shared.
You can still contribute to medical trials and research, importantly where you are asked for your permission first.
Opt-outs recorded after 1st July will prevent any further daily uploads to NHS Digital but will not result in already uploaded data being automatically deleted.
If you would like to Opt-Out: (Before 23.06.2021)
Please complete and return this form by 23.06.21 to opt out of the planned data collection due on 1st July.
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BMA GP committee executive team member and IT lead Dr Farah Jameel said:
“Everyone deserves to know what happens to their healthcare data, and throughout our discussions with NHS Digital about this programme, we have stressed the importance of clear communication with the public.
People need to fully understand what this programme means and crucially, how to opt-out of their data being shared, if this is what they want to do.
However, recent weeks have shown that communication from NHS Digital to the public has been completely inadequate, causing confusion for patients and GPs alike. Family doctors have a duty to their patients, and have their best interest at heart – so are understandably hesitant to comply with something that patients may know nothing about and that they themselves do not fully understand, even if this is a legal requirement.
With less than four weeks until the programme gets fully underway it’s clear that the timeline needs a hard reset. NHS Digital and the Government must postpone the date of the first ‘extraction’ of data – scheduled for 1st July – until such time as the public are in full possession of the facts and are able to make a fully informed decision about what happens to their data.
Unclear messaging and a complete failure to develop a wide ranging and far-reaching public engagement plan to communicate with the population, has resulted in a completely unrealistic expectation that GPs are left to communicate these complex changes.
Rushing through such fundamental changes to confidential healthcare data, losing the confidence of the public and the profession, will severely undermine the programme and threaten any potential benefits it can bring to healthcare planning and research.
Drawing insights from health-related data is vital for health service planning, and is a crucial way to monitor public health, organise local services and look at population-level health needs. Whilst the BMA has been engaged during the development of this programme, our emphasis has always been on advocating on behalf of the profession and patients. We will continue to hold NHS Digital to account, to ensure that there are appropriate safeguards in place as to how the data collected is used, and that the views of the profession are represented in all discussions pertaining to patient data.”