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!