COVID-19 exposes gaps in UK’s health and social care data

Profile picture for user ddpreez By Derek du Preez June 11, 2020
Those working with data in response to COVID-19 urge changes to be made to how it is collected and used across the health and social care system.

An image of the word COVID-19
(Image by Miguel Á. Padriñán from Pixabay )

The health and social care response to the COVID-19 pandemic is obviously incredibly complicated and has placed huge pressure on systems across the UK (and around the globe). The pandemic has been devastatingly tough for the NHS, social care, families and frontline workers, particularly knowing the tragic numbers that have died whilst in care homes.

However, now that the first peak has passed and as infections, hospital admissions and death rates continue to fall - we can take a quick moment of reflection to consider what is working, what isn't and what could be done better.

One of the talking points at the CogX Leadership Summit this week was around the role of data to support the response to the spread of the novel Coronavirus. Leaders from The Health Foundation, a charity focused on improving health and care for people in the UK, and NHSX, the digital unit of the NHS, highlighted achievements from data use during the pandemic thus far, as well as the obvious gaps resulting from how the UK's health and social care systems are managed.

The key learnings appear to be that there needs to be a better joined up approach to data collection across the health and social care systems in the UK, as well as a desire from teams to collaborate and work together towards common goals.

Sarah Deeny, assistant director of data analytics at The Health Foundation, spoke about how data collected across the social care system in the UK needs to be centred around the individual, rather than each organisation they come into contact with. Whilst people think of the ‘NHS' or ‘social care' as single entities, the reality is that they make up a huge network of fragmented organisations that often don't speak to each other as part of a network. She said:

One of the issues is that often in data, and data in healthcare and social care, is organised not around a patient, but around organisations. So if you think about social care and how somebody moves through the system - you've got an older person that's living in their own home, they start out well and don't need any additional help, with most of their health delivered by their GP. GP datasets are a real jewel in the crown of the NHS. When that person is submitted to hospital, we can see an awful lot of their data and follow them through from the GP to the hospital, because we have an NHS number.

If that person is then discharged into a care home for additional rehab or recovery, we are immediately going to stop knowing so much about them. We might know something about them from GP records still, but we don't know what additional health needs might have arisen in that social care setting. We won't know what additional nursing care they might be receiving. Or community care. And sometimes we might be able to stop seeing their GP record if they've moved to a different GP.

If you are living at home and receiving social care at home, which is the majority of people receiving social care, we don't know that - some local authorities might have that, but having that information for the individual linked in with their healthcare data is something that exists patchily across the country. We don't have one lovely national dataset.

Deeny said that the way data is used is currently "very fragmented", but that The Health Foundation has been looking at ways to make it work in its current form. For example, the charity is working with NHS England to carry out data matching and help assess trends across the UK. She explained:

In February and March it started to feel like you were really trying to tackle a mountain with a small spoon. But one of the things we were able to do is start to use the healthcare data that we do have and some simple data science to look at who is resident in a care home.

Deeny and her team were using address matching data, as well as GP data to identify who lives in a care home. Once they had that information they were able to ask: who has gone in and out of hospital? What can be said about why they have gone into hospital? And even though they weren't using social care data, the team could start to learn a bit about what needs these people have. She said:

By just using the hospital data and knowing where somebody lives, we are able to see different spreads of long term conditions (diabetes, heart failure) for different residents. That might tell us what parts of the country need different types of inputs or might need different kinds of protections. Even doing this kind of information really helps people to plan now for the next few months.

More needs to be done

However, Deeny said that whilst workarounds are possible, this isn't really the ideal scenario. Instead, social care in the UK should be making investments in data teams and systems to support responses to future challenges. She said:

But we don't think that's enough and what we want to see is that we start to have the kind of investment and innovation that we've seen in the healthcare sector, in social care. There's a massive opportunity because there's digitisation that's being rolled out across the social care system right now. If we match that with the research and development and investment in talent that we saw in the healthcare sector, we could actually start to build a social care data ecosystem. That is about actually improving the health and wellbeing of people who live in care homes, people who are receiving social care, and importantly the social care workers themselves.

I think there's an opportunity to leapfrog in some ways where we are with healthcare data. We can start to create a digitised and cohesive infrastructure from scratch, built around the person, not the organisation. There's an opportunity to work with users of services and their families. And to develop an open approach and an open culture from the start. But we can only do that if we are going to invest in a data workforce and the social care staff. What's needed is to work both locally with the social care system, but also across the network so that we start to get a national picture.

A view from the frontline

Indra Joshi, director of AI at NHSX, said that the COVID-19 pandemic has "overwhelmingly brought people together" around a common cause to try and use data in a way that is helpful for policy makers, but also people working on the frontline. She said:

Things like, where are beds available? Or, what is the oxygen capacity that a hospital has? Some really fundamental operational points. Bringing all of those different people together under this umbrella of the pandemic has been really inspirational. People working towards a common cause, saying that we need to do this, we need to bring data together, in order to not only save lives, but also help those people that are on the front line.

NHSX has partnered with different NHS bodies to create an NHS COVID-19 data store, which is primarily used to help with the operational response to the crisis. Joshi said having that clear front door' to understand what data is available to answer certain questions has been key.

Much like Deeny, Joshi hopes that in the future the healthcare system can prioritise data use and change ways of working around that. She said:

What I hope to see moving forward are these different ways of working continue. The way that we have been collaborative, the way that we work together, we've got a common goal. I do hope we see that moving forward.