When will the NHS learn from its mistakes on data sharing?

By Derek du Preez

August 24, 2021

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Britain's National Health Service (NHS) has once again found itself having to backtrack on potentially hugely beneficial data sharing plans, as it appears to have failed to learn from mistakes it has made time and time again. 

Campaigners have successfully - and rightfully so - shone a light on the NHS's recent General Practice Data Planning and Research (GPDPR) programme, which would have seen anonymised GP health data for everyone in England made available to researchers and companies for healthcare and research planning purposes. 

However, the scheme has now been put on hold, according to the Observer, as more than a million people have opted out, after a huge backlash from privacy advocates, doctors and citizens. 

This will feel like a serious case of déjà vu for those that have followed digital programmes in the National Health Service, as the GPDPR fiasco is incredibly reminiscent of the failed care.data programme that was scrapped back in 2016. 

Much like the latest NHS backtracking, care.data at the time was described as a ‘moral obligation' to support healthcare in the UK, but due to poor communication, a lack of transparency and poorly thought through decisions to not give citizens control of their data - it too was put to rest. 

Which begs the question, will the NHS ever learn its lesson on how to approach a national data sharing programme in a way that brings the entire population with it? At this point, it seems unlikely. 

RIP data sharing for healthcare? 

The frustrating thing about this whole debacle is that what the NHS - specifically talking about NHS Digital here, the body responsible for this project - is aiming to achieve potentially has huge benefits for the healthcare system and for citizens in England. 

And what it is trying to achieve isn't impossible. But once again, the programme is being approached in a way that is doomed for failure. In fact, any organization that has experience in data sharing on this scale - especially when it's such sensitive data (even if it is anonymized) - would tell you that the approach taken was never going to work. 

People have woken up to the fact that data is incredibly valuable in the digital world we are living in and this is even more so true when talking about healthcare data, which due to its nature is inherently sensitive. 

Stakeholder engagement, clear communication and putting users in control are all key. And NHS Digital was too slow to embrace any of these principles. It quietly announced the plans in May, for instance, meaning the general public wasn't aware of them, and then also only initially gave people six weeks to opt-out. 

This is your GP data we are talking about here. To not have the data sharing plans communicated with you effectively and then to only be given six weeks to opt out of the plans (with no option to after that point) is diabolical in the extreme. 

How should NHS Digital have approached this? 

To get this right, NHS Digital should have carried out an extensive awareness campaign over a lengthy period of time (say, a year) to let people know that this was coming; communicated the *benefits* clearly, both to the health service and to individuals; it should have made resources available for people to educate themselves on the process; mechanisms should have been put in place for individuals and organizations to provide feedback, to ensure stakeholder engagement; it should have been made clear exactly where and to whom data would be sent and made available to; and then finally, people should have continued access and control over their data, even once the scheme was operating. 

The approach outlined above is the bare minimum, to be quite honest, and is wildly contrasting to how NHS Digital carried out its programme - which, regardless of what it says, felt to people like it was being carried out behind closed doors and as an attempt to pull the wool over peoples' eyes. 

And this should not have come as a surprise to NHS Digital, given that reports and investigations have been carried out by the government since the previous care.data failure - outlining similar principles. In short, NHS Digital should have known and it shouldn't have been up to the brilliant work of campaigners, such as medconfidential, to expose the failings. 

My take

The real shame here is that whilst the NHS and government keeps dropping the ball on these data sharing projects, trust across the general public is further diminished each time. Each time they mess this up it will be harder to get it right, as the trust will be lost. 

And the benefits of data sharing for healthcare research are vast, which NHS Digital has outlined - including in helping research the long-term impact of COVID-19 on the population, analysing healthcare inequalities and researching and developing cures for serious illness. It's hard not to argue that those things are important, but they will not be achieved if programmes such as GPDPR continue to be carried out behind closed doors, without clear communication and without giving people control. 

In short, do better.