STOP PRESS !

GPs heard on July 19th that the scheme has been postponed for the time being, with no specific start date.

This means that the closing dates specified below no longer apply, however it does not stop you continuing to read the information below and opting out if you wish.

We would still encourage any patient wishing to opt out to do this sooner rather than later. We will process all Type 1 Opt-Outs that we receive.

What's this data grab I'm hearing about?

In 2013, the government tried to extract patient data from GP records in a programme called care.data, to be used for research and commercial purposes. After lots of controversy around lack of transparency and patient awareness, a token leaflet drop and much resistance from pressure groups and GP surgeries, and then various further attempts at extracting data, the process was finally abandoned in 2016.

Now, in the middle of a global pandemic and concurrent with yet another NHS reorganisation, the government has decided to try again. It has directed NHS Digital to take the medical data from your GP records from September 1, 2021 and each and every day thereafter in a process called General Practice Data for Planning and Research (GPDPR) or what some GPs are now calling care.data2. See link below for the government's direction to NHS Digital.

The original date for the data extraction was July 1, 2021, but given adverse publicity this has since been postponed to September 1, 2021 to give more time for patients to learn about the process, though no formal information campaign has yet been announced.

Given the lack of clarity from government about the last data grab and the worryingly similar nature of this current data grab, we are not holding our breath waiting for sensible information to arrive for our patients, therefore we are providing this page for your benefit so that you know what is going on and so that you can actively choose what happens to your data.

What's in this data grab?

The information extracted from GP records for any living patient (adults and children) will include almost all of the data in your medical record and which can be personally identified to you:

• data about diagnoses, symptoms, observations, test results, medications, allergies, immunisations, referrals, recalls and appointments
• data on physical, mental and sexual health
• data on sex, ethnicity, sexual orientation and religious beliefs
• data on family, lifestyle and social circumstances
• data about staff who have treated patients
• more than 1.4 million healthcare codes are included in total, along with a vast range of sensitive codes, such as terminations, criminal and legal history, STDs, marital problems, victim or perpertrator of domestic violence and so on (see links below)

Data extracted is not anonymised. It is pseudonymised, but this data can be linked to you quite easily by NHS Digital and any other organisations whom it chooses to share your data with. NHS Digital has the key to unlock your data so that each subsequent daily extraction of data from GP records is matched correctly, so it does know exactly who the data belongs to. GP records are often so full of information and contain such specific detail that it would be very easy to identify anybody from certain aspects of record, especially if they already have some information on you.

Ostensibly the purpose of this data grab is for research and planning, but in reality, your data can be shared with/sold to any organisation that NHS Digital chooses to engage with. This can include: commercial organisations, private providers, insurance companies, other government departments, drug companies, big data firms, police and security services. See links below for NHS Digital's price list for sharing data and a list of organisations it has already shared data with.

'Data grab', surely you're being alarmist?

NHS GP records are (quite proudly) the most complete and accurate database of medical information anywhere in the entire world. There is absolutely no doubt that this data is extremely valuable to anyone who can grab it and equally as valuable to anyone who is willing to pay for it. Indeed, it has been estimated that our NHS health data is worth £10bn annually. Given this, you can see why there is so much interest.

NHS Digital is not only taking the data without your expressed permission but is also trying to keep it on the down-low without letting you know much about it. In fact, legally, NHS Digital does not need your permission to simply take the data. GPs, who are legally obliged under the Health and Social Care Act 2012 to follow these directives (see data provision notice link below), were only informed that it was going to happen just 6 weeks beforehand (with the original extraction date of July 1st), giving them precious little time to inform their patients and to allow their patients the right to choose what happens to their data. Indeed the original closing date for patients to opt out was ridiculously short, expiring on June 23rd, only one week before the actual data extraction on July 1st. All of this in the middle of a global pandemic when GPs are already swamped with work and trying to vaccinate the nation out of a crisis. One might argue that the very short timescale was all part of the plan.

So at Ivy Grove, yes, we do think it is a 'data grab' in the most polite terms.

Your GP holds the entire history of your medical care over the course of your life; your medical conditions, medications, tests, results, referrals and all the confidential information you have ever trusted them with. For decades, GPs have always done what they can to keep your data safe, and have been entirely able to do so, until now.

Confidentiality is such a deeply ingrained principle in providing safe and effective medical care, that we must all do our duty to help protect confidentiality, and not violate it for inappropiate or invalid purposes.

What should I do about this data grab?

If you are happy with all your medical data being extracted from your GP record from September 1, 2021 and every day thereafter, you don't need to do anything.

If the data extraction has already started, and you then change your mind and want to stop it, NHS Digital has confirmed that although no more of your data will be extracted from the time you opt out, it will still keep any data already extracted from your GP record and continue to process it how it wishes. It will not delete it.

If you wish to stop any data being extracted from your GP record before it actually happens, you can opt out now, but definitely before the closing date of August 25, 2021.

How do I opt out of this data grab?

If you wish to opt out of data extraction, there are two types of opt-out to consider. You can register one or both types of opt-out at any time and you can also change your mind and remove opt-out at any time. You do need to read and understand both types of opt-out in order to make the right decisions.

How do these opt-outs work?

Above diagrams link to NHSDataSharing.Info with thanks.

Should you register both opt-outs?

It does no harm to do both to make sure that your identifiable data doesn't get to NHS Digital (Type 1 Opt-out) and that what identifiable data NHS Digital has about you doesn't get shared elsewhere without your permission (National Data Opt-out).

What about your family?

The links above can be used by yourself and your family. Feel free to share this page with any of your friends or relatives who are registered at Ivy Grove Surgery - the address of this page is ivy.gs/datagrab.

Are there any downsides to opting out of this data grab?

Your GP will continue to share relevant data for the purposes of providing medical care for you, for instance, when referring you to hospital, or to another professional, or when sending a prescription electronically to a pharmacist. Opting out does not affect the medical care you get from your GP in any way whatsoever.

Opting out will not affect:

• the sharing of information for the purposes of your medical care and treatment
• electronic referrals, electronic prescribing or electronic transfer of patient records between GP practices
• your registration and use of the online GP service, Patient Access, for online prescription requests, online records and online appointments
• your use of the NHS App along with all of its functions
• your eligibility for any NHS National Screening Programme, like breast, cervix, bowel, retinopathy, aortic aneursym
• any medical care you need for covid or related to covid vaccination or ability to show your covid vaccination 'passport'
• information sharing with the National Disease/Cancer Registers
• the National Summary Care Record (SCR) - the summary of key information from your record used by other professionals, e.g., A&E in an emergency situation
• your ability to individually provide health-related charitable acts or individually contribute to research should you wish, e.g., NHS Organ Donor Register, drug trials, genome project, living or deceased donations such as blood, bone marrow, brain, body

Hmm, you seem to be steering me towards opting out?

Haha, you noticed!

Whilst we know research and planning are vital for healthcare, as GPs and as data controllers ourselves, we have a duty to preserve the confidentiality of our patients' records and along with many other GPs, we do not feel that care.data2 is a good thing. We're just being honest with you, knowing what we know about government, mission creep, privatisation agenda, cronyism, nepotism, Big Data and the huge temptation that people's private information offers in terms of advertising, revenue streams and control.

Ultimately, it's entirely up to you what you do about GPDPR. But what we can say is that with this page, we have tried to tell you as much about the process as we know, so that you can actively make your own choice.

If you feel that the perceived advantages of sharing your personal identifiable data with NHS Digital and the myriad of other organisations, public, commercial or otherwise outweigh your inalienable right to confidentiality and privacy, then you don't have to do anything at all.

But if you do want to preserve your rights and your family's rights to confidentiality for yourself and your medical records, then you now know what to do.

In any case, if you choose to opt out now, there is no harm done, there are no negative impacts upon your healthcare as shown above, and in the future, you can always revoke your opt-out and allow NHS Digital to extract all your data as if you hadn't done anything at all.

Don't think you're just being a bit paranoid or simply over-reacting; you are not alone at all; by opting out, you will be joining 1.76 million patients who have already registered a National Data Opt-out [as of June 2021] and 1.85 million patients who have already registered a Type 1 Opt-out [as of March 2018, figures not updated but likely to be somewhat higher now]. See links below for figures.

UPDATE: in the month of June, there were an additional 1,275,153 National Data Opt-outs, making a total of 3,032,917 as at July 1, 2021.