NHS Data Sharing

I wrote what follows the other day for a friend whose parents (I was going to say “elderly parents” but realised they’re only a couple of year older than me – so maybe I’d better not!) are confused about the various NHS initiatives for sharing our medical records. And they weren’t getting much help from their GP.

So this is my understanding based on my involvement over the last few years as a patient representative, as Chairman of my GP’s Patient Group and from discussion with NHS staff. It may not be complete and it may not be entirely accurate – though I think it’s pretty close – so I’m happy to be corrected by anyone on the ground in the NHS who has factual information. I’m also happy for this to be shared as long as this preamble is included and I’m credited.

There are six NHS data sharing initiatives which people might want to be aware of; they are often confused and mostly misunderstood – mainly beacuase of the NHS’s inability to communicate effectively. I’m going to start with what was proposed about 3 years ago so you have the whole context.

  1. Care.data. This is the scheme which was proposed about 3 years ago in which GP patient records would be extracted, anonymised, and used for research and planning purposes (potentially including academic and commercially). Understandably many patients had big fears about confidentiality and the reverse engineering of data to identify them, despite assurances that this couldn’t happen. Patients were able to opt out (the default was for everyone to be opted in), which many felt was the wrong way round. The scheme was also very badly communicated and thus widely misunderstood. As a result the public concerns, the scheme was withdrawn pending a rethink and has never been resurrected.
    My opinion: This is, at least for now, irrelevant; forget about it.
  2. Hospital Event Recording (or whatever it’s officially called). This is the hospital equivalent of care.data where hospital records are extracted and anonymised for research and planning use. It has been running for many, many years (maybe 20 years?) without anyone knowing (or apparently caring). I am not aware of any means of opting out, but there may be one. Given that GPs have 90% of the patient contact in the NHS this will be generating one, even two, orders of magnitude less data than would care.data.
    My opinion: You can’t change it, so it’s not worth worrying about.
  3. Summary Care Records (SCR). This is one of the two initiatives you do need to know about. It was introduced at the same time as care.data (hence a lot of the confusion). Again the default is to opt in everyone, although you can choose to opt out.
    This is an extract of your GP’s records. It contains information about what drugs you are currently prescribed, what you have been prescribed in the last 6 months, your allergies and very little else. It does not include specific information on your ailemnts, nor does it contain information on your GP consultations etc.
    This record is available throughout the NHS only to specifically authorised clinicians (eg. A&E consultants) who may need it urgently. [You will know that every NHS employee has a “chip & pin” ID card which gives their appropriate authorisation to NHS IT systems; it works like your bank card. A&E consultants (and possibly some others with a real need to know) have an additional authorisation on this card which gives access to SCR.]
    So if you turn up at A&E, and cannot remember/say what drugs you’re on, it allows the clinician to see your medication etc. to (a) get an idea of your underlying conditions and (b) know what drugs they can/cannot give you. If the clinician wants to access your SCR they are required to get your consent before doing so; if you are unable to give consent (eg. you’re unconscious) they may still access the record but they have to make a note in the record of the circumstances under which they accessed it. I believe that your GP sees an alert to tell them your record has been viewed – but they should be getting an alert that you’ve been at A&E anyway. As you’ll see, this can be a life-saver and you really do not want to opt out of it.
    My opinion: The vast majority of people will want to be opted in to this. It could be a life-saver.
  4. GP demographic/epidemiological data. The NHS collects, from every GP practice, some high-level demographic and epidemiological data – ie. number of patients, their age profile, ethnicity profile, and how many suffer from which ailments. As far as I am aware this is aggregated data collected at the practice level; it does not contain information (even anonymised) on any individual. This is used for future planning of healthcare services – eg. this area has a high prevalence of diabetes, therefore we need to provide more diabetic nurses or clinics. This data is collected automatically and has been for some years. You can neither opt in nor opt out.
    My opinion: You can’t do anything about this, so forget it.
  5. Your GP’s Clinical Records. Your GP keeps records of your medical history, drugs prescribed, hospital referrals and so on, which they update every time you visit them (or the practice nurse etc.). The clinical information is available only to clinicians; it cannot be seen by (for instance) receptionists, as there is strong masking of the data in the GP systems depending on the viewer’s authorisation (see “chip & pin” card above).
    One thing which is happening is that GPs are moving towards patients being able to interact with the practice online, via a specifically authorised system. This allows patients to do things like book appointments and request repeat prescriptions online, even when the surgery is closed. One option in this is to allow the patient to see the coded clinical parts of their medical records, including things like blood test results, for the last year or so. This requires a second level of authorisation of the patient by the practice – you have to request this; the practice has to permit it specifically for you.
    Many people will not want to do this as it is just one line coded descriptions. For example I just looked at my record and it shows, in seven codified entries, that I saw the nurse the other day to have wax removed from my ears. The entries look like “Tympanic membrane normal”; “Syringing ear to remove wax”. Not hugely informative. As a patient you can see only the coded parts of the record created by a clinician; you cannot see any free-form comments or non-clinical actions.
    My opinion: This is too much information for most people and it can be ignored unless you’re really inquisitive. It is available only if you actively request it.
  6. Clinical record sharing. This is the other piece of data sharing you do need to know about. Increasingly GPs are able to share clinical records electronically with hospital consultants (and other providers) – assuming, of course, their IT systems can talk to each other. This goes beyond the SCR. If you are referred to a hospital your complete record can be made available to the consultant; they then have your full medical history and are not reliant on the minimal information which your GP will provide in the referral. The idea is that this will result in better healthcare, better outcomes and fewer stupidities like consultants prescribing conflicting drugs because the don’t know what the other is doing.
    This sharing is NOT automatic: on each occasion your GP should ask if you consent to your record being shared, with this specific consultant/clinic, for this referral; you may say “yes” or “no” or ask for some parts of your record not to be shared. My understanding is that the consultant must also ask if you are happy for them to read your records. Unless you consent twice the records should not be opened. The intention is that, over time, the system will also work the other way, with your GP getting access to your hospital information – but we’re not quite there yet, although some parts may be working.
    My opinion: In most instances you will probably want to permit this sharing as it is in the interests of you getting good care.

It is important to note that in each case where you are able to opt out, you must do so specifically for that one piece of sharing. Opting out of one does not opt you out of all.

So in summary …
Option 1 is irrelevant (and included for clarity).
Options 2 & 4 you can do nothing about, so stop worrying about them.
Option 5 is something you have to request from your GP practice (if they have the facility available; not all do); many people won’t want to do this.
Options 3 & 6 are the really important ones and in my view the vast majority of people will want to be opted in to these – they could be life-savers.

Hopefully that is a bit clearer for everyone.

As I said, if anyone in the NHS knows (yes, actually knows!) of anything factually wrong, then please let me know. (I do NOT want the comments filled with conspiracy theories, flapping about confidentiality or security, and anything for which there is no evidence – I reserve the right to remove such comments. My blog; my rules!)


  1. Kathy Reynolds

    Keith your explanation concurs with my understanding of Care.data and current reading on NHS Digital of SCR etc. Thankfully you explain it more clearly that I ever could. With appropriate acknowledgment may I share this at a meeting tomorrow?

    It does appear that GP staff are very confused about what is shared. Also invitations to see your online record are very poorly explained. I agree that for many/most people the coded record will be a disappointment. However for some people such as myself who have regular treatments based on blood test results getting direct access to results can save hours hanging on the telephone to reception staff who often provide inaccurate information because they do not understand that the simple low, normal, high comment on pathology reports is not what you require to make appropriate decisions. To make effective use of the work of NHS Digital will require a huge amount of education at all levels from patient to Consultant and regrettably there is little investment in this.

    1. Keith Marshall (Post author)

      Kathy … Many thanks for the comment and your appreciation. Yes, of course you may share this – the more people understand it the better. I agree that receptionists don’t fully understand what test results mean, but can just say what the reviewing Gp has noted on the records. I also agree that we have a long way to go, at many levels, with education. I’m about to post an old article I wrote which explains care.data and SCR even more clearly. Keith

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