National public engagement on the use of health and care data

In 2022, the Department of Health and Social Care and NHS England set out to do something different, engaging the public directly to build trust in how health and care data is used.

They commissioned Thinks, Insight and Strategy to conduct a large scale public deliberative programme.

Between 2024 and 2026, thousands of people across England took part in this national conversation.

We chose deliberations as our methodology for this project because they're a really fantastic methodology to discuss complicated, interconnected issues where there's no clear answer.

Deliberations are a really powerful tool because they bring together a broadly representative sample of the population of England.

This national conversation took part in four phases.

We discussed the use of data for research, the idea of a single patient record, the choices people should have over their data, and the safe linking of health data with other data sets.

With this project, it was fantastic to see the richness of discussion, the level of detail of discussion people were having and the commitment that members of the public really had to the topic and to making sure that the policy that was being developed was going to work really well for as many people as possible.

I just really wanted to be involved in something as interesting and potentially rule changing as as this is going to turn out to be.

I think I'm happy to see that such forums exist now.

It's really stood out how people have become really interested and engaged in the topic, stayed engaged and have really developed and built on there the ideas that they've heard from each other, from specialists, and really they've worked so hard in order to come up with a set of recommendations.

This really changed how I think about my own health data.

Hearing a lot more about how it's used and how it might potentially be used has made me think a lot more about my data that's out there and how it can all affect everything.

So it's really lovely to know that there are policymakers who genuinely want what is going to be best for us as the public and really want to know what our opinions are.

I think the the most interesting thing for me has been really understanding what health data and data linking can actually be used for, for the greater benefit of society.

What we've got from these deliberations is a really clear evidence base which we can we can take forward and we can make much more informed policy in the future.

I think programmes like this, I think short term understanding what matters to the public around their data and and what people reasonably expect in terms of safeguards and how their data will be used.

I think that really matters to strengthen policy and programmes and make them better because no one expert or group of experts has all the answers.

Longer term, I think an exercise like this matters to public trust because for many people, we often don't think about our data unless we suddenly have a reason to be concerned about it.

Work like this can be shown to people, and people can access it easily and understand how decisions have been made and thereby trust in the processes that have informed how decisions were made about data.

In 2024 and 2025, NHS England, the Department of Health and Social Care and Thinks, Insight and Strategy, asked people across England what they think about how the NHS uses health and care data.

This happened in 3 parts.

Part 1 looked at how health data is used for research.

Part 2 focus on joining up data into a single patient record.

Part 3 that are the choices people can make about how the data is used.

Each part had three strands in person workshops of 120 people with a mix of views, a larger server of 2000 people from across the country and, because we want to hear from everyone, specific sessions of people in communities who don't usually have their voices heard.

Across all three parts we learnt that people mostly trusted the NHS, especially when they understood how data would help patients and when it was clear who was using it.

They were less sure when data would be used outside the NHS.

I feel more trusting now actually, because now I understand the systems they have in place and I think the NHS is trying to be as sensitive as possible with my data.

Using safe, secure systems and removing personal details from data make people feel more confident.

Being open and clear about how data is used also helped build trust.

Transparency is the most important thing.

People should know who is looking at their information, what it is used for and who is responsible for handling the data.

People agreed that using health data should help patients, local communities and the NHS.

As I see it, we all pay for the NHS.

We have the same duty to pay taxes.

I believe we should share as much as possible so the service is better for everyone, including yourself.

Each part also had findings for specific data topics.

In Part 1, people wanted to research using NHS data to be safe and follow fair rules.

They supported charging researchers a fee to help cover costs and support the NHS.

We should take advantage of the fact that we have a valuable pool of data.

We should incentivise and make the information more accessible.

The money that is generated should only benefit the NHS.

In Part 2, people like the deal of having one health record for all their data in one place.

But they said it must be safe and secure.

Only the right people seeing it.

The benefit is, especially if you have complex conditions, that you have all the information in one place, especially in emergency situations.

People wanted a group of experts to be involved in making decisions about how the health data could be used, including GPS, data security experts and members of the public.

In part three, people said they wanted a choice about who uses their data, but as they learned more about how they'd helped NHS, some even said chained out of NHS should be part of using its services.

If you want to use the public services, you should allow them to use your data.

Data is so important in the process of planning.

Public thinks that there are great benefits to using health and care data in different ways only if it is safe, secure and honesty about it's use.

These public recommendations are now supporting future change by NHS and the government on data.