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Opinion: data sharing is a good thing – if it’s done right

The NHS can use our data to improve services, but it needs to be transparent. Do you feel your personal data should be treated with more respect?

Those of us in England have all seen the information in GP surgeries about GPDPR, yes? No, wait, you probably haven’t, because hardly any of us has set foot in a GP surgery for more than 18 months.

If you’ve seen anything about this project to upload patient data to an NHS digital platform, it was probably on social media, which isn’t known for getting detail and nuance across.

For the record, I’m broadly in favour of this scheme (the full name of which is General Practice Data for Planning and Research). Our concern at Which? is how it has been publicised – on posters in empty GP surgeries and an obscure NHS webpage.

The good news is the scheme has been postponed and won’t go live until tests have shown it’s easy to opt out and that data will be deleted if you want it to be.

Why data sharing can be a good thing

What’s frustrating is that data sharing can be a good thing. This scheme will make pseudonymised data available to researchers and the NHS, meaning they can plan services and develop drugs and treatments. It’s not just in health: if you use antivirus, you’re almost certainly sharing information about what threats your computer encounters, which helps make antivirus better.

Londoners have been tracked through the Tube network via their phones’ wi-fi, helping Transport for London understand how travellers used it.

If you’ve downloaded the Windows 11 beta, you’re sharing data with the developers to help them understand how it behaves on the widest possible range of PCs.

Transparency, privacy and respect

The concern, as always, is transparency and privacy. Too many providers assume it’s OK to help themselves to data, and it’s too often up to us to be eagle-eyed and pounce on things that overstep the mark.

Data about us – the data we create, the data that’s created about us – should be treated with more respect. That way, we might be more inclined to share it for the greater good.

Were you aware of plans by NHS Digital to share medical data from GP records in England? Do you agree that data sharing can have benefits when applied in the correct way?

Share your thoughts in the comments.

This column appears in the October issue of Which? magazine.

Comments

This is rather topical to me at present; I am aware of the patient data sharing requests and the variations before that.

I’m curious about sharing of data concerns as currently patient data is already shared with private companies in order for those companies to provide access to your patient record at your GP to your phone or web browser.

In requesting access to my own patient data , to enable apps like Airmid, NHSApp, Patient Knows Best I discovered that there are reports, tests and results missing. In some cases data regarding my health is incorrectly calculated , e.g. Qrisk2 data.

If Data is going to be shared, irrespective of its anonymisation it should be accurate and updated and reviewed by the patient concerned.

I’m still chasing that missing data from Hospital visits which are not on my own record. I have experienced poorer diagnoses and treatment because information about myself , shared by other professionals, was not consistent with what I had communicated.

It is not enough to share data, it has to be good data and currently I dont believe it will be even good enough data.

The trouble wont be opting out or in , it will be policies, costs, and choices will be made on bad data.

I agree that the NHS could have wasted more public money on better publicity and implementation. However, I don’t have a problem with my personal data being shared in the way that is being proposed.

I would hope and trust that my medical history will be used to improve the FREE services provided by the NHS in ways that will benefit us all, and possibly make medical advances that will give others a better quality of life.

I’m afraid that those thinking of opting out are being selfish and have an inflated opinion of their own self-importance. I can assure anyone from all the health insurance proposals and claims I have seen, that your medical conditions are not unique and you are really not that interesting as an individual.

I was aware of the NHS proposal and that data would be anonymised. I am quite happy to share my data in this way to help, in any way, improvements in health understanding and care.

OK, we have seen examples of data being handled carelessly but I do not think that should be used to raise fear of contributing to worthwhile causes. Whilst I suppose I’d like, on principle, to keep my health data private I ‘m not sure what harm could come if I was identified. There may, of course, be others with conditions they do not want to share. Anonymity would protect them.

Excuse ME! You couldn’t be more wrong! I want to opt out and I am NOT remotely “selfish”, at all. I know for a fact that some of my health records are not accurate and are based on gross misunderstandings where various “professionals” that I’ve spoken to over the years have gone and wrote down stuff that’s very different from what I told them and it only leads to more outrageous confusion because no-one in supposedly professional positions will listen to me when I’m the only one who knows the real facts about my life and they’ll only believe the word of someone with fancy status who thinks they’re so “vastly superior” and that they know “far better” etc. when in reality they DON’T know any such thing, but they just blindly follow whatever’s in the records or whatever they think is right and totally abuse their power. And the conditions I have forced on me ARE very unique to me and don’t even begin to match anything more widely known and are seriously sensitive and I don’t want every tom, dick and harry knowing, especially not private outfits who have no right to pry into my private matters. Such information should only be disclosed on a strictly need to know basis only and not shared with just anyone and should be properly confirmed and not just blindly misjudged.

The NHS has literally hundreds of IT systems containing clinical data that in some cases goes back decades; it’s difficult to argue that it shouldn’t be exploited by researchers for the benefit of patients, and arguably the NHS should benefit financially for access to the unique resource it is.

However, there’s a BUT. Data aggregation is a huge challenge to data security, and the capabilities of modern ‘big data’ analytics make personally identifiable information (which is at the centre of GDPR) a difficult concept, especially if NHS data becomes combined with data from other sources. The more widely data access is spread, even under GDPR provisions, the bigger the risk of it being accessed by someone to the detriment of individuals. So, to me, the key issue is how will access to the data be controlled, who is accountable for the impact to individuals if it’s somehow mis-used and, only 4 years after ransomeware took down large parts of the NHS IT infrastructure, do we believe that the NHS has the capability to exercise that control ?

As my condition is very rare, I was referred to the research team at my local hospital for treatment, and as its cause is as yet unknown, it remains one of special interest to continuing medical research at global level.

For this reason I have no objection to my data being shared if it will help others with the same condition. Early diagnosis is extremely difficult as it’s symptoms can be due to many other causes, and some unfortunate people can expire before it is diagnosed. I was one of the lucky ones as it was picked up by chance during a routine blood test for something else.

There is no cure at present, which is the main reason why I am happy to share my data to prevent premature early death in younger people with the same complaint.

Dr Hanley says:
17 September 2021

As a Gp who has been working continuously through the covid pandemic in Scotland , I am absolutely appalled at the throw away comment “hardly any of us have set foot inside a Gp surgery for more than 18 months” . We are working above capacity having consultations either over the phone or face to face if after triage we feel this is clinically what is needed . We are already receiving such a bad press at the moment and the level of abuse we are subject to by patients is increasing week by week and comments such as this are not at all helpful and indeed are inflammatory . Kate Bevan clearly has no idea
Of what has been happening in Gp surgeries during the pandemic or she would not have written this . Which – you should be ashamed of yourselves and on behalf of all Gp colleagues I would like a formal apology for this .

Dr Hanley says:
18 September 2021

If you read my message correctly I stated that we have been seeing patients for face to face consultations throughout the pandemic so my original objection to your statement stands

Kate Bevan says “ …..because hardly any of us has set foot in a GP surgery for more than 18 months.”. Dr. Hanley says this is not true. He should know as he is directly involved. I have removed the unwarranted thumbs down.

Most GP practices employ an efficient manager to run it. Doctors are usually too busy doing what they are qualified and handsomely paid to do, which is to care for their patients needs, as and when it is deemed necessary.

Dr Hanley doesn’t make it very clear whether he is part of a group practice or whether he goes it alone, the latter inevitably would place a greater burden on him without team support and the Covid-19 would have added to that burden.

In my area, we have a team of practicing GPS who go to great lengths to protect each other from the pandemic, inasmuch as it is quite difficult to get past a receptionist on the other end of the phone to make an appointment to see them. On phoning you will receive an automated message, with several other options of contact before you are considered eligible to visit any one of them.

What I would say to Dr Hanley is; even though I am considered extremely high risk if I contract Covid-19, it is almost 2 years since I actually saw a doctor in person. I receive blood tests every 3 months administered by a phlebotomist which is sent off to the local hospital responsible for my care, which is then analysed and followed up about a week later by a telephone review carried out by a senior research nursing associate.

Dr Hanley’s angry reaction to what appeared to be a valid point was indicative of someone under an enormous amount of stress at this difficult time, but he owes it to himself to take some time out if he can, as his present low mood is bound to be picked up and reflect on his patients in their time of great need.

I think it is impossible to generalise about the number of patients registered at primary care practices that have physically set foot inside the premises and seen a GP face-to-face. No two practices are alike and the needs of patients vary widely across the NHS and throughout the country. I think Kate made a reasonable statement of her impression of the situation for the purposes of her article on the data sharing issue.

I have been to my GP surgery a few times during the Covid-19 epidemic for dressing changes by a nurse. On most occasions I was the only person in the waiting room whereas previously there would usually be several other patients [and their accompanying friends or relatives]. From my experiences I would deduce, as Kate did, that “hardly any of us has set foot in a GP surgery for more than 18 months”.

I recognise that GP’s have been under additional pressure because with the hospitals having had to defer numerous procedures and operations for other illnesses and conditions many patients are requiring intermediate treatment from their GP until the backlog is cleared [and even then waiting lists will be lengthy in many cases].

I endorse Beryl’s comments on Dr Hanley’s reactions. It is indeed likely to be the fact that the patients currently being seen face-to-face by their GP are the more serious and complex cases and therefore the more stressful. Telephone consultations are not without their difficulties either at times and e-mail and postal correspondence must also add to the pressure.

I shall be seeing my GP for a face-to-face consultation in a month’s time and I shall make sure I enquire as to her general well-being and how she is coping with the medical workload as well as looking after her family who have been at home all day. I expect to get a very stoical answer that possibly conceals the true extent of the pressures. I am hoping she has been able to get away for a holiday during the summer.

My apologies for referring to Dr Hanley as ‘he’ if in fact it should be ‘she’, but without a first name either/or was the only means of address.

The GP practice has not been offering appointments at the surgery but a GP will ring that day, to protect the staff and patients. I have used this system twice during the pandemic and it seemed a very sensible approach. If it had been necessary to actually see a GP I presume that arrangements would be made.

I was provided with an email address so that I could send in letter that I had received on discharge from hospital. As a result I was promptly referred to a consultant.

I am very grateful to those working in the NHS and other healthcare roles during these very difficult times.

Placement error.

Eur Ing Dr Gordon Hayward says:
19 September 2021

As your articles was about data-sharing-for-good in general rather than just the GPDPR, I was surprised that you did not mention the concept of stewardship by Data Trusts. Although not yet legally defined it is being taken forward by the Ada Lovelace Institute and in the Government’s AI Council Roadmap. More concretely, a “Data Trusts Initiative” has been launched Cambridge University backed by some philanthropic funding. They have advertised for applications from ‘data trust pioneers’ to join a pilot project. [https://datatrusts.uk/pilot-projects ] It stressed that these should be ‘bottom-up’ focused projects -ie where control and/or benefit derived from the data lies with the individuals and/or groups of citizens who supply it. I have asked your colleague Sue Davies if Which? wants to join in a pilot proposal for a Data Trust to steward a database of consumer experiences unsafe products. Is this pilot something you would be interested in following?