GPDPR - Type1 Opt Out, NHS National Opt Out, "NHS Data Grab" explained

Credits for the some content of this page: NHS Digital, Dr Neil Bhatia, MedConfidential, Dr Gandalf and UseMyData

Update 27/8/2021 - the GPDPR programme is on-hold

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, by sending in a paper form.

 

In this article we explain:

  • How the GPDPR opt outs work

  • What you might want to consider before making a decision to remain in, or opt out

How to opt out of sharing your data - GP Data 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 form, or a NHS 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.

What is a Type1 Opt Out, how do I opt out of GPDPR and where's the form?

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.

 

Also, please note that NHS Digital have been planning to retire the Type1 Opt Out, and combine it with the NHS 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 the NHS National Opt Out?

Warning: it can take NHS Digital up to 21 days to process the NHS National Data Opt Out.

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), or, 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 NHS 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 NHS National 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 using the NHS National Data Opt Out, but the sooner you do it, the sooner it takes effect. 

  • The NHS National Data Opt Out will not stop your GP data being extracted by the new GPDPR 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 NHS 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 ‘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

These videos explain the background to GPDPR

How the Type 1 Opt Out Form and NHS National Data Opt Out can work together

The diagram below shows how the two types of Opt Outs can work in three scenarios:

  1. 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:

    1. Anonymised​

    2. Pseudonymised

    3. Clear

  2. NHS 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]. ​​

  3. Both Type1 and NHS 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.

GPDPR Opt Out.jpg

Diagram used with kind permission of Dr Neil Bhatia

The pluses and minuses of staying in, or opting out of GPDPR  

Below we discuss some pluses and minuses around GPDPR, with links to more in-depth articles and a selection of videos.

 

First, some 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 researchengagement 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.

The videos below [some short, some long], cover a number of angles on why you might want to Opt Out of GPDPR for the moment, including:

- Anonymised and Pseudonymised data is not as safe as the current GPDPR documentation suggests, it's easy to re-identify you when it's matched with other information.

- Fears that this information will be useful in further privatising the NHS

- Fears about which Big Data companies might get their hands on your data

- Concerns that the data could be shared in better ways [e.g. 100% through a Trusted Reseach Environment [or TRE]

Sum Up

Broadly for:
•    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


Against:
•    Some well-respected privacy campaigning organisations 
•    Just under 3% of people in England have registered NHS National Opt Outs before May 2021, in June 2021 another 100,000+ NHS National Opt Outs were registered once people started hearing about GPDPR.

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 24th of August - 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: