Vivaldi: The data revolution coming to care homes

0:28Back to school is busy enough.

0:35all engine running absolute genius get this welcome welcome this is the naked scientist podcast this is the program where we bring you the biggest breakthroughs and talk to the major movers and shakers in the worlds of science, technology and medicine. I'm Chris Smith and this week, can data improve the lives of people in care homes?

1:13There are more than 16 ,000 care homes across just the UK, housing around half a million people. Staggering numbers. They're meant to be places of safety, support and quiet, relaxed companionship for the people who live and work in them. But when COVID-19 arrived, they became one of the pandemic's deadliest front lines. Residents died in huge numbers. Families were locked out and many staff, traumatised by the experience, left the profession entirely. The systems meant to protect people failed. Moreover, beyond basic public health data, like details of infectious outbreaks, Very little information is actually collected about residents' experiences in the care home setting.

1:58So we have very little idea what constitutes best practice and what interventions translate into the best outcomes for residents or staff or where the opportunities are to make improvements. In a bid to see what might be possible, the Vivaldi study, a nationwide effort to gather data from inside care homes, was launched. It's been led by Professor Laura Shawcross, who's a public health researcher who wants to use data to improve the lives of people who live and work in the care home sector. To hear what she's got in mind and what's motivated her to venture down this path, I went to meet her at University College London.

2:35There is a complete lack of data on people in care homes, so residents and staff. If you can't measure things, you don't know where problems lie and that makes it really hard to know how to intervene to make improvements. I must admit it was something of a shock to me when I learned that there are half a million people or so in care and in care homes and we don't take any steps to actually monitor what's going on there strictly speaking from an infection perspective we have some monitoring so we monitor outbreaks in care homes but you're absolutely right we don't have accurate data on who's in a care home and this does seem to be a very important missed opportunity if we don't know where the problems are how do we fix them?

3:15What sorts of things do you envisage measuring then? So we can start quite simply things that are already measured in other settings so in the NHS we have very good data on how many people go to hospital on the reasons why they go to hospital on the use of antibiotics for example other medications surgical procedures these things are all recorded in the background all the time if we could start by measuring some of those things for care home residents, that would be a massive leap forward. But longer term, what we really need to do is start thinking about the measures that matter to people in care homes.

3:49And so that's particularly thinking about things like quality of life, and we need new ways to measure those kinds of outcomes too. Indeed, the thing we all talk about is evidence-based practice. But if you don't have the evidence, you don't know what is best practice. And so if you've got care homes, and they're following a kind of code of conduct, but they're not sharing data as to what to do under certain circumstances. That means there must be a huge gap there. Yeah, I think that's really true. And I think it manifests in lots of different ways. So one of the problems that, again, really highlighted in COVID, if you don't have data, it's ignorable.

4:25It's really easy for everybody to be, oh, well, we don't know what's going on there, so we don't need to worry about it. As soon as we were able to start putting data out for the care sector, everybody realised the scale of what was going on and that helped to trigger a lot of the things that were implemented to try and address the problem. But similarly we've got some care homes who undoubtedly are doing brilliant and innovative things to tackle lots of problems but that knowledge and experience isn't being shared across the sector. If we think in the NHS we have clinical trials to learn what to do, that's best practice for how to do something and then that's really robust evidence that can be disseminated across the NHS and we need a similar approach in care homes.

5:05Care homes are extremely busy, there's a huge demand put on staff, recruitment is difficult and one of the things that they're all going to say, I can anticipate if you say can you just record some data, they're all going to say look I don't have time. How are you going to do this in a way that passively collects everything you need and doesn't make their life a misery? Yeah, so this was so apparent to us during the pandemic, because you're right, the workforce is incredibly stretched. So what we have done is design a research study that allows us to pull the data from systems that it's already been collected in.

5:42So we are not asking care home staff to collect any data for us at all. Now, longer term, if we want to do more complex studies, we may have to do some additional data collection. but the idea is that people can take part and we can learn a lot just by processing data that is collected in the background not increasing workload. How many care homes have you got on board to do this to prove the point? We're now up to nearly 700 which is a phenomenal number. There have been lots of research studies across the care sector in the past but nothing in comparison with healthcare settings. What's completely novel here is the scale and the fact that we are doing this using routine data and so that's a completely different approach and it has huge potential to totally transform how we do research and potentially surveillance and even policy making in the care sector.

6:32So the project presumably has a bit which is making the interface and how you pull the data in and then it's got to have a component which is what you're going to do with the data. So we've got two key outputs, one is dashboards and these are for care providers and for policy makers and the idea is we're working with those groups to understand what should we feed back and how can we feed it back in a meaningful way and we're starting simply making comparisons between care homes in a fairly rudimentary way but then we're also using that data for research so starting to measure things like variation in antibiotic use why does this care home have high rates of urine infections than the others those kind of things and their longer term getting really excitable is thinking towards doing studies like we see in the nhs so things like clinical trials and care homes and we're really excited about the opportunity to do things like vaccine trials so getting new vaccines say for norovirus currently being tested in the general population we should be doing these kinds of studies and care homes too thought-provoking stuff laura shawcross there at ucl university college london we'll get laura's perspective on the improvements that are being made a bit later on but now we're going to find out what it's like to live and work in a care home.

7:48I went to Wharton-on-Thames in the southwest of London to meet Slav Janik who manages Adelaide House which is a residential care home and also to meet some of the people he looks after. To his mind there's a digital disconnect. Data are being collected and shared with other healthcare providers but the use of that information can be ad hoc and often the work gets duplicated owing to the multitude of different systems. So a way to unify the information and then share it widely would be, he says, a terrific help. I began by asking him what he sees are the biggest areas for improvement. So I think one of the biggest ones is the miscommunication within different organisations governing bodies.

8:30We're talking different services like NHS, GP practices, pharmacies, hospitals and then governing body like a CQC the communication line with local authorities where each and one of us is kind of almost like an individual entity instead of being joint one so we have different processes different systems because the other one uses different system we have to basically repeat the same information over and over again a big digital disconnect then extreme I think there's at the moment around 15 to 20 different programs used across almost the same services within the national system so yes. How to your mind does that affect the care that we're able to give to residents in a care home like this one?

9:14It takes the time it's the time which we're supposed to spend on the floor with the residents fulfill their needs is taken away or constricted because we also have the legal aspect which has to be shared with so many different organizations and it's time consuming and not effective. Let's think about a sort of person's journey then. Say a person has a problem and they need to go to hospital. How readily can the information follow that person to a hospital to inform what the doctors do to them while they're an inpatient? Within a care setting like mine we use something called a passport or documentation package which we will provide the hospital in all the information relevant to the resident.

9:57That data may or may not be used in a hospital, but also on the way back it may not be shared. So we require very specific information when somebody returns to us. Of course, we need to know their medical condition, we need to know the medication changes, and what treatment is requested from us. If those informations are not provided to us because on occasions it may be lost in the transport, wrong information were given, medication were given wrongly or not at all that will then start as from the point one where we have to contact everyone yet again and trying to obtain the vital information for the residents who will suffer delays and unfortunately in some situations those delays may have a detrimental effect on their health.

10:41Vivaldi aspires to try to change some of this particularly with respect to infections first how common is this as a problem and and how do you think actually having better data collection could enable you to act in a more agile way and manage infection problems better so infections are quite common within a setting especially with the client group we are working with the benefit of the vivaldi will be trying to recognize the common trends pre-empty certain level of incidence from happening. One of the most common will be the urinary tract infection, which simple infection like that, which can be quickly solved with antibiotic or very often avoided by having certain interactions put in place, which Vivaldi will be able to pinpoint and share across the services, will kind of stop a domino effect.

11:33Very often there's something which starts as a very simple infection leads to the severe consequences. What do your residents make of are they aware that they're making history here and that with this project they're actually helping to improve the care sector? They see themselves as being interesting to others and I think that is the biggest thing that at this stage of their life they contribute so heavily to the future and quite a lot of residents who are aware of it of the program they may not know the exact name of it but they know that those informations are important in some ways also bring additional meaning to the light that you know very often people see that you know being in a care home is kind of the last stage of your life in some ways it is but it's also still the stage where you can contribute for benefit of the ones who are today 20 but will reach that time can we have a chat to some of them yes let's go and let's start with eric come on with me hello eric good morning how you're doing how long have you been here this is my second year what do you make of actually being in a situation like this were you were you at home before and you had to come into the co-home independent living on my own with my little dog my um son was worried about where i was because i couldn't cope on my own so he suggested i come to a care home and i ended up here How old are you, Eric?

12:5885. Really? I wouldn't have thought you were, actually. Yeah, I thought you were older. No, I'm just joking. When you actually had to make the transition of life at home to life here, what was that like? Hard. Very hard. Because I've been independent all my life, and I've got a good family around me, so they helped me transition to come here. I never thought I'd reach this age at the start. I thought I'd be 70-odd and that would be it. But I joined the Royal Navy States from school and that stood me in good stead for the rest of my life. So I've always been very positive. Thank you very much, Eric.

13:39You're welcome. Thank you. This is Linda. Oh, hello, Linda. How are you? Very well, thank you. How long have you been here? A year last May. And what was the reason for coming to live here? Close to my daughter's home in Brentford. I had a stroke and if I'd have stayed in accommodation in Leeds it would have meant them having to travel all that distance just to visit and I wasn't having that. I made the decision to come and live down south. What's it like having to leave your own home and come into a setting like this? Was that hard? Yes, it's hard to start with. You have to move away from your friends and neighbours.

14:26What's made it easier, though, and how are you getting on now? I'm getting on great at the moment. My daughter's just been on the connection with the meeting and she's seen a difference in this place for me. Have you been poorly at all while you've been in? Have you had to see the doctor while you've been here? Just small things, nothing major. Was that a routine, easy thing to do, seeing the doctor? No, it's like getting blood from a stone. Really? Was that just hard getting an appointment? That's where it is these days, getting the doctors to see you. Did you know that the home here is taking part in a sort of research study to try to build a better way of collecting information and data and sharing information with other healthcare providers like hospitals.

15:25Are you positive about that sort of approach? Do you think that's a good idea? Yeah, definitely. So you don't mind being a guinea pig? No. You're very future-looking. You've got an iPad on the table in front of you, so you're obviously quite tech-savvy. No, definitely not. I know what I need to do for what I want to do, but the rest of it I need help with. I think we all need a bit of help, especially in this area. Linda, thanks very much for talking to me. Thank you. And my thanks to Linda, Eric, and Manager Slav for showing me around Adelaide House in Wharton-on-Thames. In a world where AI is changing every role in every industry, knowing who actually has deep expertise matters more than ever.

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17:13This is the Naked Scientist podcast with me, Chris Smith, and this week we're asking whether better data can improve the lives of those living and working in care homes. The Vivaldi study has drawn on the expertise of people across the care home sector, and they include Zoe Fry and Mike Slater. Zoe is director of the Outstanding Society, and she also ran her own care home for many years. Mike is a pharmacist and has considerable experience of working in the NHS and with care homes. They've both played a key role in Vivaldi, and I wanted to better understand from them what the outputs from the initiative are going to look like and how this will translate into the intended quality improvements.

17:54I think it's such an exciting opportunity. I think if we look at our colleagues in the NHS, they use data, they use research all the time. we don't use as much evidence base in adult social care. So to be able to do that on a large scale is really exciting for the sector. And I think what's so different about this project is we've seen academia, policymakers and providers come together. It really is research led by social care for social care. And also the academics understand the complexities of the adult social care sector. It's a busy place though, social care, isn't it? We've already highlighted the fact that people have not got the time to spend collecting data.

18:38So you're trying to make that as frictionless and seamless as possible. But actually, there's an ask there, which is we've generated some findings. Now you've got to read them, take them on board, work out how to implement them. What provision are you making to help people to get to grips with the findings that this will inevitably throw up? So we're going to be developing dashboards. to dashboards will have the result of the data that we've been collecting and we'll be able to use that to share best practice. So if one care home for example has had five hospital admissions in the last month and another care home has had 20 hospital admissions they've both got 30 beds that specialize in dementia care for example we can look at benchmarking and say well actually what does that care home do that we can learn from and we can then use that data to transfer into policy to be able to improve what we do and have things more bespoke to adult social care because it's quite a complex sector.

19:38Can there be a sort of standardisation of this, Mike, in the same way that we have health standards that different parts of our health service subscribe to and they have to follow, they're held to account against certain clinical standards. You say, well, look, this is how you should do good infection control to prevent norovirus or this is what your policy should be around visitors at certain times of the year to stop flu outbreaks. Is that something that's potentially coming from this? Yeah, that's exactly what we're looking to end up with is those kinds of policy at certainly regional, if not national levels, to really give care providers the substance behind their recommendations.

20:21If we go back to COVID, people were grasping at straws when guidance was coming out and actually it was very difficult to implement guidance appropriately and quickly within your setting so what we're going to try and do is create a much better way of doing that and things like norovirus come up all the time in in care homes and they're doing wonderful things we visited a home fairly recently where they'd done an incredible job in preventing the spread of norovirus throughout their home however the the cleaning products they use weren't standardized The mechanism that they used to barrier nurse wasn't standardized or shared with anybody else.

21:01So how do we take that best practice and then take that further and tell the whole world about it? And also things as mundane as I've heard one person say about a care home that had a creche in it, for example. And a creche gets kids. Kids get germs. If you've got high throughput of germs on the kids, you might get more germs in your care home. So it's sort of connecting the dots in that way. And I was a little bit shocked that we weren't already doing this more. But it's that kind of learning that once you've got that information, you can share and mitigate against those threats and also get all the benefits from the fact that if you've got lots of kids around, they're going to see grandma and granddad more.

21:40Exactly that. And that's where the benchmarking comes in, because no two homes are the same. So this is where we really struggle to compare services, because there are some places that have creches and they run them exceptionally well and they don't get norovirus all the time. but there are other places that do suffer that and it's comparing those appropriately to other homes that are providing the same type of service. We can't compare homes who have a creche and a huge dementia population with those who have complete capacity. It's just not fair. So we have to do the work in the background to make sure that we're giving accurate data to these providers that really mean something to them.

22:18What are the users going to see then? So the end result of this They're going to get a dashboard and it's going to present what's going around at the moment, so perhaps what to look out for. It's going to present a sort of digest of what best practice would be around X, Y and Z. Is there a way that you're going to present the information so that they can follow this? Initially, it's probably going to be a lot more basic than what you've just suggested, but that's where we're looking to go. That really is the hot spots of this is best practice and hot spots of how could we improve this. Is there a worry?

22:52Are some care homes going to highlight the concern that this could be a finger-pointing exercise? Yeah, and that's what we've been unbelievably keen to avoid. This is not about a stick, it's all about the carrot. The integration with the Care Quality Commission that we have, the regulator of the industry, is completely on board with the fact that we're doing this for the best interest of the industry, not to give them a finger-pointing tool. Zoe, about 700 care homes have signed up so far. We think there's about 10 ,000 plus in the country. So you're on your way to having 10%. I suppose one of the problems is that the care home sector, it's not like the NHS where the taxpayer is picking up the tab.

23:38Some of these care homes are going to be public, but some are going to be private. And so there's got to be a win for everybody. And if they're able to use the data and not have to do relentless form filling, like Slav was saying earlier, to give their metrics and so on. It is actually a headache removed for them. So there is an attraction to being part of this. I think it's saving everyone replication of work and it's also providing a service across health and social care. So it's benefiting the whole healthcare system of everyone working together. How is it funded? How are you going to make this sustainable long term?

24:11So we need public funding. So we've had funding for the initial years. recently we're seeing the results from the COVID inquiry and how important Vivaldi was during COVID so we need that funding to continue to be able to provide this pilot going forward. Zoe Fry and Mike Slater there. We have an ageing population and that means increasing numbers of us are going to require care in homes like the one we featured earlier on in the programme today. Better data collecting initiatives like Vivaldi are surely going to be a necessary step in preparing for the future. But what do our policymakers think of the project?

24:50Well, Deborah Sturdy is the Chief Nurse for Adult Social Care in England. What's her take on Vivaldi, I wondered? It's absolutely fundamental. Data is information and if we act on that information, we can improve things. When I started in this role, I knew that one of the things I wanted to focus on was research because of that paucity of information and data in social care. So we've commissioned work around nursing research we've appointed the first professor of social care nursing so yeah absolutely Vivaldi is a critical part of that building our evidence and using that information like I say to improve our skill set of our enormous social care workforce 1.7 million bigger than the NHS actually helping them to have the requisite skills that they need to do their job well and to meet the ambition of making social care a great place to work and a great place to be looked after.

25:48As Chief Nurse for Adult Social Care, what would you like to see as the first questions being answered by a system like this? Where are the real priorities that someone in your position is going to turn to people running these sorts of studies and say, I want the answer to this, this and this. This will help me to lobby governments and policymakers to make sure we can effect real meaningful change? One of the things for me, one of my kind of personal priorities I think is very much around the quality of experience of care. We need to have consistency. It's about what does it feel like for the person who's in receipt of those services.

26:26So I think capturing things in real time and start seeing from those patterns good practice and I think one of the things we're great at across health and social care is talking about the bad stuff but never the good stuff so how do we capture good stuff that's going on and how do we then replicate that and what are the factors that influence that that mean that we can do that consistently across the piece so that for me is really important I think where Vivaldi started around that whole infection space is really important particularly with the vulnerable populations that we look after in social care you know if we look at the populations of people who live in care homes you know estimated around 70 % of those people have are living with some cognitive impairment so what can we learn from that and another area that I think we need to do much more work on is not just that general older population but the aging population of people with learning disability and autism as well what can we learn about those fundamentals of care in those settings as well because I think there's a real I think there's a paucity in social care per se around research and evidence.

27:31I think for that particular group, there's even less around and so important as we see people who are living much, much later into older age with learning disability and autism. So there's a lot of stuff we can do in that space. We're not even, I think, thinking about it in the way we need to be. And as they say, knowledge is power. Deborah Sturdy there, she's Chief Nurse for Adult Social Care in England. finally here is Laura Shawcross again to reflect on the project as a whole I put it to her that Vivaldi needs to be economically sustainable if it is to meet its long-term objectives yeah that's right I mean we've been research funded now since 2020 various sources and we need to have a sustainable mechanism for this it could underpin so many different pieces of work research surveillance national policy.

28:23It needs to be part of national data infrastructure. And we're starting to hear more and more about this in the COVID inquiry at the moment, about the importance of data and why the lack of good quality data was so important and such a catastrophe in the pandemic. What's your reflection, having heard the programme now and everyone's contributions, everyone's thoughts, and obviously been at the centre of it yourself, you initiated all of this. What do you feel now about how it's taking shape and where it's going to go? I've been very much on a journey, I hate that phrase, but during the pandemic, in that I mainly worked in the health service before.

29:00And now I've been working in care homes for five years. And you realise this lack of parity. It is a complete two-tier system. And that has got to change. And we're hearing more and more from government about prevention, about the importance of refocusing on communities. We have to recognise all of this will not work, the NHS will not work, without really excellent social care. And a key part of that is data, because you've got to understand what's happening, how people are moving between services. Now, of course, there are national programmes that are aiming to improve data quality, but what we're doing in Vivaldi is we're delivering.