GPDPR - what is it, and your Opt-Out options explained
Credits for the some content of this page: NHS Digital, Dr Neil Bhatia, and MedConfidential
From the 1st September, NHS Digital will upload your GP medical record, every day
The General Practice Data for Planning and Research [GPDPR] data extract by NHS Digital from GP Practices across England will help the NHS to improve health and care services for everyone, by collecting patient data and holding it in a central national database.
This is an upgrade to an existing similar process called GPES – General Practice Extract Service, this new data collection will be more efficient, effective, and much more frequent.
For example, patient data held in this new national database can help the NHS to:
• monitor the long-term safety and effectiveness of care
• plan how to deliver better health and care services
• prevent the spread of infectious diseases
• identify new treatments and medicines through health research
If you would not like your GP data shared with NHS Digital using the GPDPR, you need to register an Type1 Opt-Out with your GP Practice, a week before the 24th August 2021.
In this article we explain:
How the GPDPR opt-outs work
What you might want to consider before making a decision
How to opt out of sharing your data through the new GP Data for Planning and Research extract - GPDPR
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 either a Type 1 Opt-out or a Type2 National Data Opt-out, or both. This 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.
What is a Type1 Opt-Out – it stops your GP medical data being shared [apart from for your Direct Care]
If you live in England and want to stop your GP data leaving your GP practice for purposes other than your direct care, you can do so by filling in and giving or posting this form to your GP Practice before the 24th of August.
NHS Digital have been planning to retire the Type1 Opt-Out and combine it with the National Data Opt-Out for some time. So if you do decide to use this opt-out, keep an eye out for letters from your GP or NHS-D about any changes being made to the Type1 Opt-Out.
You can download the form in .PDF, .ODT or MS Word format by pressing these buttons.
What is a Type2 National Opt-Out – stops your other medical data being shared by NHS Digital [apart from for your Direct Care]
If you want to stop:
your non-GP data, such as hospital or clinic treatments, being used for purposes other than your direct care (e.g. for research and planning)
warning: it can take NHS Digital up to 21 days to process this opt-out
your identifiable GP and other NHS data being shared by NHS Digital, you must use this process:
If it’s just for yourself, use NHS Digital’s online National Data Opt-out process – this process only works for individuals aged 13 and over. Or, you can use the NHS App to set a Type2 Opt-Out.
If you have children under 13, you need to fill in this form [PDF] and e-mail or post it back to NHS Digital – this form works for both you and your children.
If you have an adult dependant for whom you have legal responsibility, you must use this form [PDF] and send it back to NHS Digital on their behalf.
There is no deadline for step 2, the National Data Opt-out (i.e. your non-GP data), but the sooner you do it, the sooner it takes effect.
The National Data Opt-out will not stop your GP data being extracted by the new GP data collection.
N.B. If you opted out of care.data in 2014, then you shouldn’t need to do anything now. As most people did both a ‘Type 1’ opt-out and what is now a National Data Opt-out, you can check your NHS Digital opt-out status online at NHS Digital. Your GP opt-out status will probably match the opt-out status shown there; although if you’re not sure, giving a a ‘Type 1’ form to your GP Practice now doesn’t have any risk.
If you are not sure whether to opt out or not, views for and against opting out are presented below
How the Type 1 Opt-Out and Type 2 [National Data Opt Out] stop your info being shared
The diagram below shows how the two types of Opt-Outs can work in three scenarios:
Type 1 Opt-Out Only - this shows your GP Data being blocked from being shared with NHS Digital. But NHS Digital are still able to share your other medical records, in all these formats:
National Data Opt-Out Only - in this scenario, NHS Digital are blocked from sharing your clear medical data collected from your GP and all other NHS events, but can still share anonymised and pseudonymised data [which, as we discussed at the start, can be re-identified].
Both Type1 and National Data Opt-Out. In this third scenario, NHS Digital never get your GP data, but can still share your anonymised or pseudonymised records from other parts of the NHS.
Diagram used with kind permission of Dr Neil Bhatia
Arguments in favour of you letting your data be shared by GPDPR
Below read the views of organisations broadly in favour of data sharing:
• NHS Digital
• Understanding Patient Data
NHS DIGITAL - How sharing patient data with NHS Digital helps the NHS and you
The NHS needs data about the patients it treats to plan and deliver its services, and to ensure that the care and treatment provided is safe and effective. For more information, please click this link. Please come back here for the opt-out if you need them. https://digital.nhs.uk/data-and-information/data-collections-and-data-sets/data-collections/general-practice-data-for-planning-and-research
UNDERSTANDING PATIENT DATA.ORG
UNDERSTANDING PATIENT DATA.ORG is supported by Welcome [a large drugs company], the Medical Research Council, the Economic and Social Research Council, the Department of Health and Social Care, and Public Health England.
They say "It doesn’t solve all the issues, but the new system does improve on some of things that we know people care about. There is lots of research that investigates people’s attitudes towards how data from their health records is used, with some consistent findings. People tend to be more supportive of the use of health and care data for research and planning if certain conditions are met. Those conditions include de-personalising the data, independent oversight and transparency, especially if data may be accessed by third parties. Our Foundations of Fairness research, engagement work by One London and citizen’s juries led by the National Data Guardian all stress the importance of these conditions.
Although the new system is more transparent than the existing one, with better information on NHS Digital's site for patients and GPs, it is critical that the Data Protection Impact Assessment is published as soon as possible.
For more of their views, please click here: https://understandingpatientdata.org.uk/news/our-perspective-new-system-gp-data
Arguments against you letting your data be shared by the GPDPR
For balance, here are some arguments against letting your data being shared [as a reminder, you will need to register one or both opt-outs as described above to do this].
• MedConfidential is a well-respected privacy campaigning group
• Dr Neil Bhatia is a highly knowledgeable and well-respected GP in the field of patient data confidentiality
Although DigitalHealthCoach respects both, we don't always agree with their views.
MedConfidential - Matt Hancock has quietly told your GP to hand over your health data. Why?
This article by MedConfidential on the Open Democracy website is very readable.
“If you live in England, all your encounters with your GP – information about your physical, mental and sexual health – could be ‘sold’ to third parties”.
For more, please read https://www.opendemocracy.net/en/opendemocracyuk/matt-hancock-has-quietly-told-your-gp-hand-over-your-health-data-why/ and https://medconfidential.org/for-patients/gp-2021/
Dr Neil Bhatia
Dr Bhatia’s views can be read on his website here: https://caredata2.nhsdatasharing.info/
If you are interested in finding out more about how the NHS shares your information, this is a very informative site to visit.
BRITISH MEDICAL ASSOCIATION ORIGINALLY SAID
The BMA say “GP data has a crucial role to play in research and planning which can improve public health, but it is important for patients and the public that this data is made available for appropriate purposes in a secure and trusted manner. We are broadly supportive of the principles of the new collection in seeing fewer extracts of data, and a reduced administrative burden for general practice.”
To read in more detail please click here: https://www.bma.org.uk/news-and-opinion/statement-on-gp-data-for-planning-and-research
BRITISH MEDICAL ASSOCIATION AND ROYAL COLLEGE OF GPs ASK FOR A PAUSE ON 4TH JUNE 2021
The British Medical Association and Royal College of GPs today told NHS Digital they do not endorse the UK government's imminent haul of English GP data – dubbed "the biggest data grab in the history" of the service.
The BMA, the powerful UK doctors' union, has separately called for a delay to the programme until the public is properly informed.
In their joint letter to NHS Digital - a non-departmental public body commissioned by the Department of Health - the professional groups for family doctors criticised the organisation for a "lack of communication with the public regarding the general practice data for planning and research (GPDPR) programme."
The joint letter signed by professor Martin Marshall, Royal College of General Practitioners, and Dr Richard Vautrey, chair of the BMA’s powerful General Practitioners Committee ratcheted up pressure on NHS Digital as a legal challenge to the data grab is being prepared by campaign groups.
• NHS Digital, Department of Health and Social Security, the government
• Some drugs companies and medical research charities
Asking for a pause [in a joint letter.
The British Medical Association
The Royal College of GPs
• Some well-respected privacy campaigning organisations
• Just under 3% of people in England have registered Type 2 Opt-Outs so far
WHAT TO DO NEXT ABOUT NHS GPDPR - GP Data for Planning and Research
Have a family meeting, decide what you want to do.
• If you are happy with these changes, the new GPDPR - GP Data for Planning and Research, you don’t need to do anything, and your data will be shared automatically
• If you want to stop your data leaving your GP surgery for these kinds of uses [secondary use], print out the letter, one per person, fill in, sign and send to your GP Practice to arrive well before the 23rd of June - there is no need to call your GP Practice, and please don't ask for a GP appointment to discuss
• If you are happy with your data being collected by NHS Digital, but then you don’t want it shared by them, use the Opt Out Type 2 process online
You can also:
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