I trust the NHS with my data. But should you?

But as the National Data Guardian politely puts it in her excellent and detailed blog, the narrative is often dominated by the “high-profile setbacks and failures”.

For better or worse, in my various roles over the last decade I have had a front row seat for many of those attempts at NHS data reform, trying my best to advocate for the involvement of patients in discussions and championing the views of the wider public.

On a positive note, I have never gotten the sense that the NHS has any ulterior motives here. All the data sharing initiatives I have been involved with started with the ambition of making care more personalised and more efficient. The teams behind them are made up of genuine, bright and compassionate people who just want to help the NHS be better and do better by those it serves. Even when the NHS brings in external companies to support I see this is because they need specialist help, and they do it with rigorous controls in place. I trust them wholeheartedly with my own data.

From a National Voices perspective, in my first three months in post I have heard members talk about a need for the NHS to be better at collecting more accurate data about people and use it to ensure services can better understand health inequalities and provide genuine person centred care.

Learning from mistakes

My biggest frustration though is the inability or unwillingness of system leaders to learn, particularly when it comes to the lack of emphasis or prioritisation of good communications. Time and again major data sharing initiatives, often years in the planning, seem to be landed on the wider NHS and the public with limited notice, little space for conversation and broad promises that it is all in a good cause. This approach, whatever is driving it, has seen public trust in the NHS using data fall from around 92% in 2018, to 83% in 2021 and now to 59% according to a new poll done in July of this year.

These stats are stark and it has led me to question more deeply why I trust the NHS when so many others now don’t? Well it’s precisely because of my involvement. I have had access to experts and decision makers. I have had the chance to put questions to them, to understand why some compromises are possible and why others are not.

At its best moments, during the development of the National Patient Data Opt-out in 2018, it felt like a genuine co-production with patient group leaders, patients themselves and members of the wider public. Together we helped design a system that gave patients more control over how their data is used, that was easy to engage with and meant that if patients weren’t happy with what was being done with their data had a way of registering that, even if it is limited.

The introduction of the Opt-out was also supposed to stimulate an ongoing discussion with the public about how the NHS uses our data. It was supposed to not just offer choice, but greater visibility of individual data initiatives and to build a groundswell of support by demonstrating the benefits. But once it was rolled out many of the additional aspirations stalled.

Address the radio silence

It would of course be impractical for NHS England to engage with all 55 million adults in England in the same way I have been involved. Indeed past attempts at more superficial one-to-one engagement, for example by sending letters and pamphlets to every household, have actually backfired. But there are things they could do.

Firstly, they need to make sure the conversations and engagement with the public about data are continuous. The big periods of radio silence we currently experience allow false narratives to grab hold. To do this properly, programme leaders need to see the engagement as important as any of the technological solutions, and put the resource in.

Secondly, they need to do more to understand who is most concerned and then work with them to find out what more detail they want and where they are  most likely to seek that information. For example, most patients will speak with a frontline NHS worker, like their GP, so if the professions are blindsided by plans or not supported to have those conversations, then data sharing initiatives are always going to struggle.

Cast iron promises

Thirdly, make sure the policy behind everything offers concrete propositions and cast-iron promises about what data is involved and why it is needed, who will have access, what people’s rights are to opt-out and what penalties will be in place for deliberate misuse. You can’t “comms” your way out of bad policy, and grey areas that are open to interpretation are the death of such programmes.

In the coming months we expect NHS England to announce further plans around the Federated Data Platform (FDP), the most recent big data initiative. Unlike previous programmes this is not a centralising of data, but will create a platform for NHS organisations to share information with each other where it is considered helpful, for example when moving a patient from one hospital to another. A private software company will be appointed to provide the platform, but the data itself will stay entirely within the control of the NHS.

Given past experience, and the lack of detailed public conversation about it to date, there is potential for confusion around the scope and purpose of the FDP. Following the three steps outlined in this piece could make all the difference in terms of developing public trust. In an ideal world there would already be a free-flowing public debate about this but there’s no time to start like the present.

Biography

Jacob joined in May 2023 as Chief Executive of National Voices. He is a committed advocate for working with people accessing health and care services and the wider public to help improve the accessibility and quality of the care they receive. He loves to combine deep qualitative insights with quantitative data to challenge traditional thinking on how to tackle policy challenges. Prior to working for National Voices, Jacob spent almost 10 years helping to build the Healthwatch network. In this time, he led successful nationwide policy influencing campaigns on a huge variety of topics, from maternal mental health services to access to NHS dentistry. He has also worked in local Government and for the British Library.