Charlotte Refsum: ‘Digital health records are critical to changing the NHS’

Dr Charlotte Refsum is a passionate advocate for the power of the single patient record to transform health systems.

After starting her career as a GP, a role at KPMG took her to visit hospitals and health systems around the world.

Now as director of health policy at the Tony Blair Institute for Global Change (TBI), Refsum is at the forefront of its mission to harness the power of AI, data and digital for the public good.

Ahead of her keynote at  Digital Health Rewired 2025, Refsum explains why she believes that a digital health record for every citizen is key to preparing the NHS for the AI era.

We’ve heard a lot about the NHS being broken. How big a role does digital have in repairing the health service?

It’s huge. It could allow us to start engaging with health systems in a very different way.

There is dissatisfaction, not just in the UK but across the world, that people are paying a lot in taxes and getting very poor public services or paying a lot for healthcare and not getting great outcomes.

Tony [Blair] has been saying recently, it’s therefore incumbent on progressives to come up with disruptive solutions, not just small increments on the status quo.

I genuinely think that the use of AI digital and data can allow you to do that.

We tend to think of the NHS App as a side event, whereas it could be the fulcrum of an entirely different operating model for the NHS

For example, we tend to think of the NHS App as some interesting side event, whereas actually it could be the fulcrum of an entirely different operating model for the NHS, where we utilise digital pathways much more and empower people to manage their own health.

The app could take AI’s ability to manage complexity and properly move into the preventative space. It’s a totally different way of delivering healthcare and generating health – moving properly into prevention.

If we don’t work out how to harness that technology people can get fed up, because the NHS has never had more money and more people than it does now.

TBI’s report in August 2024 called for a universal digital health record. How does that differ from existing universal care plans?

The digital health record will enable us to have these new models of care, like if you want to extend Pharmacy First, or have integrated neighbourhood teams.

You can’t have Boots thinking they’re managing your blood pressure over here and your GP thinking they’re managing it over there, and each working on two different records.

You can’t have integrated neighbourhood teams where social workers are going in one day and health visitors the next, and then a GP, and they’re not working off the same record. They’re clearly not a team unless they’re using the same record.

AI is probably going to make health services more fragmented, because people will be able to access medical advice more freely, cheaply and widely through the internet and through apps.

We need a digital health record to keep all that information together in one place.

OneLondon, Manchester and the other shared care records go some way to delivering the properties of a digital health record, but there are things that they don’t do.

For example, I may be able to review my health records through the NHS App, but I can’t then share them with trusted third parties to help me manage my COPD or diabetes or blood pressure.

If we want to be able to use more of these services, you need something pulling it all together. It is completely critical to changing the operating model of the NHS.

We’ve seen a lot of government emphasis on developing the NHS App. What would you like to see happen with the app?

Essentially, the NHS App is the patient portal through which we can view our personal health record, interact with the NHS and do admin things like book appointments, but [it should  also enable us to] combine in-person and digital components of care.

So if you get diagnosed with cancer, for example, you can enter your symptoms into the app, and then it knows that because you’ve got a temperature and you’re on chemotherapy, that you need to go straight to hospital because you could have neutropenic sepsis.

If you look at patient portals across the world, there are amazing examples. There’s a place in Finland called Hus where they’ve redesigned 400 clinical pathways so that there is both an in-person and a digital component to that pathway.

The capacity is immense.

You’re on the digital and tech working group for the NHS 10 year health plan. What can we expect to see coming out of that?

The government has made no secret of the fact that they want to develop a single patient record and that’s part of the remit the data and med tech working group.

As I wrote in my paper, there’s more than one way to get to a digital health record, so we’re thinking about what is the best way to achieve it.

What are the barriers to achieving this vision?

There are issues to do with data sharing, information governance, interoperability, standards and legacy systems.

It’s not beyond the wit of man to create a digital health record. It will happen

There are lots of things that will be standing in its way, but I don’t think it’s impossible, and other countries have achieved it.

If you look at Estonia, Denmark, India and Singapore and Indonesia, it’s not beyond the wit of man to create a digital health record. It will happen.

We’ve had issues in the UK around patient fears about data privacy and the sharing of health records. How can we overcome those issues?

When you look at the public deliberation exercises, most people feel comfortable with sharing their data for delivering good, high quality patient care.

I understand the anxieties around this concept of selling data – although I think very few organisations actually do sell data – and we’re moving towards an era where data is a huge asset to the country.

With the consent of individuals, allowing organisations access to anonymised datasets to use for research and planning could be hugely beneficial to the NHS.

When you explain it like that, most people don’t object.

There’s been a big push from the NHS for all systems to adopt the federated data platform (FDP). Do you think the FDP will feed into the digital health record?

The FDP could be part of the solution if you wanted to go down that road, but I don’t know whether it will end up in the final architecture.

One of the issues it suffers from is that it doesn’t have any primary care data going into it, so there would need to be changes there.

How do you think the health system will be different because of AI?

It’s interesting that there’s been a slight backlash about AI with everybody thinking that we’ve got ahead of ourselves and we’re too breathless about its possibilities and capabilities.

If you look across the world, it’s already been deployed at almost every level of the system.

At a national level, it’s being used to help develop health policy, for pathogen surveillance for pandemics and to develop new drugs to speed up clinical trials.

It’s being used at regional level to do population health management. It’s being used in primary care for clinical decision support and in hospitals for operational excellence. It’s even being used by individuals that are trying to manage their own health on their phones.

We’re clear that AI isn’t a silver bullet, but it could be transformational in the way that we both generate health and consume healthcare.

Can you give us a taste of what you’ll be talking about at Rewired 2025?

I’ll be talking about the digital health record, new models of care enabled by that digital health record and enabling the shift to prevention.

Refsum will be speaking at Rewired 2025, which takes place at the NEC in Birmingham on 18-19 March 2025. Register here. The event is co-headline sponsored by The Access Group and Microsoft. Alcidion, Nervecentre, Solventum and Cynerio are also sponsors.