How can healthcare best use past, present and future information to support transformation?

That the NHS has an abundance of information but a lack of insight is a truth frequently repeated. At some trusts, hardcopy notes continue to occupy valuable space while the intelligence they record remains difficult to access or analyse. Even where electronic patient records systems are being installed, there remains the open question of how best to use previous information – and, indeed, how to adapt as software systems advance and the structure of the NHS evolves.

There are additional complications: concerns about information governance, patient trust; about keeping information safe; a need to develop an understanding of how to use information across all constituent organisations within newly statutory integrated care systems.

To consider some of these issues, HSJ  recently held a roundtable event. Run in association with Iron Mountain, it brought together panellists from a range of backgrounds to consider one central question – how can healthcare best use past, present and future health information?

The core theme to emerge: the need to establish clarity of purpose around data – a shared understanding of what information is being collected, why, in what contexts it can best be used, and in which standard format it should be recorded. In building this understanding it should also be possible to understand what data no longer needs to be collected, and to form a basis on which to establish effective governance and to build public trust.

Full screen in popup

• Previous
• Next

1/8

show caption

 A continuing lack of clarity over which data is needed, why, and in which format it should be collected is hampering the NHS’s efforts to make the best use of information

As the panel gathered for an HSJ roundtable exploring how the NHS could best use information to support transformation, Nicola Byrne suggested a question that needed addressing first: just what transformation is it that we’re expecting said information to help achieve?

“With digital and data we often become entranced by the world of possibilities,” suggested Dr Byrne, who is the national data guardian for health and adult social care in England and also a practising consultant psychiatrist at South London and Maudsley Foundation Trust.

“You often come across things that feel like solutions looking for a problem. So it’s really important to be clear about what it is we’re trying to achieve when we talk about data and digital.”

It immediately put the spotlight on what would emerge as the central point of the roundtable discussion: that clarity of purpose is key to making the best use of healthcare information.

The discussion was run in association with information management company Iron Mountain. Its head of healthcare, Paul Curtis, neatly summed up that point by arguing any information – and any digitisation of information – must be “patient outcome-driven”. “Otherwise why is it being collected?”

“The NHS tends to have conversations around information wants rather than information needs,” suggested Jessica Morley, who at the time of the roundtable was a PhD researcher at the University of Oxford. (From January 2024, she will be a postdoctoral researcher at Yale University Digital Ethics Center.)

She continued: “There’s a lot of hypothesising about all of the potential whizzy things we could do with data. But actually an information need is quite a specific thing: it’s why do I need the information that I’m asking for, and do I have evidence that the information I’m asking for can help me achieve the outcome I’m trying to achieve?”

Consistently posing such questions would make it easier to understand what information is most useful to collect and/or preserve and where, she argued. It would also make it easier to understand which data no longer needs collecting, what should be recorded which currently isn’t, and what is being recorded in an inconsistent or unhelpful fashion. All would help the service make better use of information.

Ditching the duplication

“We need to put richer data in fewer places with better access mechanisms,” she said. “At the moment data is flowing in 1,000 different places and it’s incredibly duplicative. And because it’s duplicative, we don’t know where the gaps are. We have so many people collecting the same information hundreds of times and there then are big gaps of information there’s never collected once.”

It was a point with which Charles Tallack, director of data of analytics at the Health Foundation, was in firm agreement. “Obviously there is a huge amount of information and data that’s collected, but I do wonder whether we actually are missing some key bits of information,” he said.

We need to put richer data in fewer places with better access mechanisms

“For example, I think it’s quite astonishing that we actually have so little information on the effect of care. We’ve got PROMs [patient reported outcome measures] for hips and knees, but we don’t have them for lots of other things. For virtual wards, which is a very hot topic at the moment, it turns out there isn’t actually a dataset for patients who are admitted to them. And I’ve got lots of other examples [of data gaps].”

Anthony Tracey is well versed in both the gaps and potential redundancies of NHS information. He has spent 27 years in the NHS, always in data-related roles, and is currently digital director at Hywel Dda University Health Board in West Wales.

“I don’t think the NHS reviews why we’re collecting data,” he said. “A policy lead will come up with a great idea to define and collect a metric, and then we’ve got to go and collect it, and then the policy focus will drop off but we’ll continue collecting it.

“Constant review – a kind of quality improvement process of why we’re collecting something, what the business requirement is – doesn’t tend to be done very well,” he suggested.

Data driven, or data informed?

“I think there’s sometimes a bit of a preoccupation with gathering as much data as we can and a lot of it doesn’t end up being useful or used, and doesn’t translate into insights and just sits somewhere,” said Nicola Hamilton, head of Understanding Patient Data, an independent NHS Confederation-hosted initiative aiming to make the use of patient data more transparent, visible and trustworthy.

For Rakhi Rajani, chief digital and strategy officer at Genomics England, that distinction between having data and having insight is a crucial one. “There’s a difference between being data driven and data informed,” she argued. She fears that too often in healthcare there is a tendency to focus on the former rather than the latter, and at potentially significant cost.

“There is the potential for the right data held in the right way and used in the right way to make a really substantial difference to how we diagnose and treat patients. And we shouldn’t forget that.” 

Resolving issues about how data is preserved could significantly improve the service’s ability to make the best use of data from the past to inform better delivery of care in the future

Charles Tallack is a strong advocate of the healthcare sector learning from the past but, he says, “that doesn’t necessarily require the total richness of an individual’s record.” The Health Foundation’s director of data analysis, who was speaking at a recent HSJ roundtable, added: “It doesn’t mean keeping every single bit of data.”

Part of the NHS making the best use of information will involve deciding what needs preserving, for how long, and in what capacity. While this may feel like a daunting prospect, Jessica Morley – who served on the 2022 Goldacre review into safe and efficient use of health data for research and is now a postdoctoral researcher – argued it once more came down to considering data needs.

“We have to differentiate between [what we need for] direct care versus when we’re using data for population health and programme management,” she said. “For direct care purposes, we don’t necessarily need to be able to know whether somebody had an ingrown toenail and now has covid. But for population health management, we actually might, because we might want to know different types of causalities.”

In a world of what she called “big data-fication”, her concern is that there will be a growing tendency to collect and save “absolutely everything we could possibly want”. Paradoxically, at the same time, an unclear legal picture means a confused setup on how long data is kept.

“We need to sort out what happens to people’s data when they die,” she contended. “It’s covered by different types of regulations – you’re jumping between common law and the General Data Protection Regulation, or whatever the UK comes up with instead. But [how long data is kept] depends entirely on the type of data. GP data is stored for different lengths of time to hospital data, and different again to what might happen to data that’s collected in a registry or to what’s happened if you are part of a clinical trial.

“We spend a lot of time talking about how wonderful it is that the NHS has got these hugely longitudinal records, but we don’t if we delete them – and if we randomly delete them in a very ad hoc way.” Resolving that could significantly improve the service’s ability to make the best use of data from the past to inform better delivery of care in the future.