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Doing the hokey-cokey with patient data

by in Medical Records, NHS

You put your patient data in

Your patient data out

In, out, in, out,

What’s it all about?

You do the Type 1 Opt-out

And you turn around

What’s the National Data Opt-out about?

I do think the latest shenanigans regarding the General Practice Data for Planning and Research (GPDPR) initiative could be made into a cover of Black Lace’s ‘Hokey Cokey’. I’ll even offer to write the lyrics!

In all seriousness, though, the GPDPR was allegedly going to “reduce the burden on GP practices, allowing doctors and other staff to focus on patient care”. It’s had quite the opposite effect, with practices stating that they’ve been inundated with phone calls and queries from patients wanting to know what it’s all about.

Back in May, we were advised by NHS Digital that “Respected voices across the clinical, academic, research and patient spectrum have welcomed the introduction of a new service from NHS Digital”. I have a question: if the patient spectrum were happy, why do they appear to be wanting to opt out en masse?

Talk about giving the general public a stick to beat primary care with! Throughout the pandemic, primary care has been wrongly criticised, accused of being ‘closed’ and asked, “When are you going to open again?”; practices were even vandalised! So, just when we can see a glimmer of hope at the end of a long tunnel, along comes the GPDPR.

Please don’t think for one minute that I’m saying there isn’t a place for research in medicine; we all know that effective, ethical research is needed to help make improvements to all healthcare services. But wouldn’t more communication, more explanation – in fact, more detailed information – perhaps help put our patients’ minds at rest? It may even help us explain to patients what it’s all about!

I’ve heard many comments about the GPDPR, some of which I couldn’t possibly write in this blog! There seems to be a general consensus out there that the NHS have tried to launch the GPDPR in stealth mode. Surely not? There are, of course, the Transparency Notice and the GP Practice Privacy Notice and both are, on the surface, reassuring to patients insofar as they state that your name, address, images, uncoded data, etc., will not be shared.

But on the flip side, it does state that data will be shared about staff who treat patients. What data is this? Role, registration details, names – will this be pseudonymised and encrypted? Do staff have a choice about their data being shared for the purposes of research? Are campaigners right and will more data than anticipated be extracted?

Much is said about pseudonymisation, yet let’s not forget that it’s only a security measure and doesn’t change the status of the data; the data is still considered to be personal data (Recital 26 of the UK GDPR refers).

Personally, I’d like to see more resources, funded by NHSE, being provided to support this initiative. I, like many of us in primary care, can’t see how it reduces the burden on practices. Answers on a postcard please! We’re the first port of call when a patient has a query about this initiative – and many others! Practices are also the place where patients are directed to register a Type 1 Opt-out or a National Data Opt-out, or both.

So, as of yesterday morning, we were all continuing to fend off queries about opt-outs and then the announcement came; the GPDPR, scheduled for launch on 1st July, has been delayed until 1st September. I’m sure most will agree that this is an appropriate action, given the concern among our patient populations.

What is the rationale for the sudden change? Poor communication. It’s as simple as that. While social-distancing measures remain in force, and while significant numbers of patients aren’t able to, or have no access to, social media, it’s an unrealistic expectation that all of our patients should fully understand the GPDPR. And, while we’re in the process of progressing towards the ‘new normal’, it only seems apt that we should call a halt to the programme and mark time (i.e., march on the spot without moving forward) until a robust communication plan can be approved and rolled out.

So, we have a reprieve. We’ve been given some time to get our heads around the rather complex subject of the GPDPR (and we all thought the GDPR was bad!). What is much needed is a large-scale communication programme aimed at targeting our patient populations, including those hard-to-reach groups.

Will it happen? I’m not so sure, but at least the BMA and RCGP are onside insofar as they want to see an improvement in communication with our patients. The Institute of General Practice Management (IGPM) have shared their position with regards to how the roll out was, and will be communicated in future. They are continuing to fight for involvement and input from PMs from the outset, you can read their supporting statement here. 

What I think would be useful is to explain in more detail to our patients how research and data collection can help to improve services. Show them statistical evidence that supports the need for research and the sharing of data.

More of this perhaps: “Rapid access to patient data provided by NHS Digital was key to the University of Oxford’s trial, which found that dexamethasone treatment reduced deaths by one-third. By April 2021, the drug had saved 22,000 lives in the UK and 1 million more worldwide.”

I agree that patient data saves lives but I don’t agree with rolling out a data-collection programme that has been poorly communicated across the country, which leaves patients uninformed and increases the workflow in general practice.

And that’s what it’s all about!

Phil Coates

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6 Responses to “Doing the hokey-cokey with patient data”
  1. Avatar
    Roz Says:

    Thanks Phil. As a long standing committee member of the Primary Health Care Specialist Group, who still has the scars from the Care.data debacle in 2014 (remember that?) perhaps I could add a little about the reasons for the concern.

    This new proposed data collection has not been passed by the BMA or the RCGP, it was brought to them three years ago as a possible project, they didn’t hear any more, and suddenly it was being rolled out.

    Phil Booth of http://www.MedConfidential.org has been tirelessly striving to get the information out there, and it is largely due to his efforts that eventually the media picked it up.

    The concerns are that access to the data will be sold to those companies you might not have wish to access your private medical data. We know this happens with HES statistics, which are anonymised, but also pseudonymised data has also been released. See http://www.theysolditanyway.org. To opt out of this secondary care release you need to use the National Data Opt Out, accessible through NHS Digital’s website, and through the NHS App.

    However patients are getting very confused between that opt out and the GPRDP one (surely no coincidence how like GDPR this has been made to sound?)

    To opt out of GPRDP it is necessary to find the form on the NHS Digital website, (not easy) or from https://digital.nhs.uk/binaries/content/assets/website-assets/data-and-information/data-collections/general-practice-data-for-planning-and-research/type-1-opt-out-form.docx

    It then can only be sent or handed in to GP Surgeries in order for the appropriate SNOMED code to be applied.

    I am hearing that some surgeries have been proactive and are sending their patients texts or emails offering them the chance to opt out that way. Having worked in general practice for many years, I have always applauded practices ingenuity, not least in what they have had to deal with over the last 18 months. I am appalled that this has been dumped on them at this time, but perhaps it was hoped that most of the population would be unaware of the scheme or the opportunity to opt out themselves and their children and those they care for.

    Of course data is needed for research, and if properly consulted, most of the population would be happy for it to be used for this purpose. They might not be so keen for access to it to be sold to large pharmaceutical companies, and for NHS Digital to sell linkage of the data to other databases, making it more identifiable. They might also not be happy at the thought of the enforcement agencies being given access, and if we are honest, what future government would be unable to resist passing a law giving access to the police and Home Office?

    But there will be some who don’t read NHS Digital’s website (the only announcement was on there until Phil Booth spotted it) and who feel they do need to opt out. Those hiding long ago abortions. Those in hiding from an abusive partner. Those with a rare medical condition that would make them identifiable by just disease code and first half of post code for example.

    Patients have been given the impression that this database will be the sharing of their records to help their own direct care, a laudible aim and covered by the Summary Care Record and the emerging LHCRs. They need to understand the difference. I am sure that the only reason for the sudden delay was the mounting of a legal challenge. https://www.pulsetoday.co.uk/news/technology/doctors-threaten-legal-action-to-halt-unlawful-mass-gp-data-extraction/

    So I am hopeful that the next two months will be used to give patients the chance to make a fully informed choice. Last time we had unaddressed flyers stuffed through letterboxes with the pizza delivery and Chinese takeaway menus!

    Reply

  2. Avatar
    Roz Says:

    Just to put the right link in, this is the correct one, sorry https://www.theysolditanyway.com/

    Reply

  3. Avatar
    Steve Maingot Says:

    I believe that the key issues are:
    – the communication was too vague and left room for negative interpretation of purpose, i.e. “commercial sale of patients’ data”.
    – pseudonymisation has not been clearly outline to interested parties; it is a well developed process to protect personal identifiable data for research and development purposes, but still allowing an approved Clinician to view a specified data item.
    – too often policies and procedures from the Centre, tend to be Acute-centric, e.g. COVID-19 vaccination – where in the healthcare system does vaccination takes place?

    Reply

  4. Avatar
    Miles Dagnall Says:

    And all so wretchedly unnecessary. The irony is that not THAT much has changed as far as I can see – indeed possibly only a new contractor being used? Indeed Population Health Management using this data as collected from GPES has helped us deliver a highly successful vaccine roll-out. My concern is that if sufficient numbers of patients do opt out as a result of this fiasco – oh and merely delaying this for 2 months makes the NHS still look like we are hiding something – it will affect planning at a local level, perhaps distorting service capacity for things like diabetes management especially among some diverse communities who show less trust in the NHS anyway. The materials on the NHS Digital website are incomplete and obfuscatory. Where is the DPIA for this steaming pile of cack dumped upon primary care practices – did you even write one? Their silence and continued lack of engagement does not bode well for reducing the burden upon practices who will be picking up the consequences for this unnecessary erosion of trust for years to come.

    Reply

  5. Avatar
    Sean David Key Says:

    Three big issues I have with GPDPR:

    Communication
    NHS-D’s approach to communicating this change has been to passively communicate it by updating their website [only]. This approach can be perceived as an attempt to leave patients in the dark and try and ‘get away with it’, damaging trust. How bad does engagement have to be, before it renders a project un-lawful?

    Pseudonymisation, and the risks of illegal re-identification
    The risk of pseudonymised data being re-identified [e.g. by matching to mobile phone location data captured by lots of apps, and sold on] doesn’t seem to be addressed by NHS-D

    Confusion about if, and when, Type1 Opt outs get ‘rolled into’ National Data Opt Outs
    When NHS-D mention Type 1 Opts outs it always comes with the caveat about future retirement and rolling into the National Opt-out. This page now says National Opt Out will apply to GP data extractions to other organisations from 1/102021, apart from NHS-D, who the opt-out doesn’t apply to https://digital.nhs.uk/data-and-information/data-collections-and-data-sets/data-collections/general-practice-data-for-planning-and-research/transparency-notice#national-data-opt-out-opting-out-of-nhs-digital-sharing-your-data- But it doesn’t explicitly say the Type-1 opt-out will be retired.

    Reply

  6. Avatar
    Jane Dalgleish Says:

    Just to add to the general discussion the Read codes on the Opt out form are incorrect! You couldn’t write it!

    Reply

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