4. How data is shaping a healthier Wales

Wales’s health and care system is grappling with complex, interconnected issues and opportunities, including an ageing population, inequalities, and the rise of new healthcare technologies. Tackling these now and in the future will require evidence-based policies and strategies that connect health outcomes with broader social factors such as housing, education, and income. A recent Welsh Government report, "Science Evidence Advice: NHS in 10+ Years" (aka. the SEA Report), highlights these intersections and guides the nation’s vision under the A Healthier Wales strategy.

In this fourth episode, we explore how administrative data is uniquely positioned to help. We’re joined by Tracey Breheny, Director for Strategy and Corporate Business, Health, Social Care & Early Years Group at the Welsh Government, who unpacks the insights these linked datasets provide, the current situation facing healthcare, and the potential of data-driven policymaking. Dot Williams, Project Officer at the Butterfly Conservation and member of the SAIL Databank Consumer Panel, offers a personal perspective on navigating Wales’s health services and shares her vision for positive change.

From improving workforce conditions to addressing health inequalities, this episode reveals how data is shaping a healthier, more equitable Wales.


Wondering what administrative data is? Visit https://www.adruk.org/our-mission/administrative-data/.

If we used any terms you're not familiar with, check out ADR UK's glossary at https://www.adruk.org/learning-hub/glossary/.

For information on the Welsh Government report and strategy go to https://www.gov.wales/report-projections-health-evidence-and-policy-recommendations and https://www.gov.wales/healthier-wales-long-term-plan-health-and-social-care.

For information on ADR Wales work in the areas of health, wellbeing, and social care, visit https://www.adruk.org/our-work/browse-all-projects/adr-wales-themed-projects-health-and-well-being-1/, https://www.adruk.org/our-work/browse-all-projects/adr-wales-themed-projects-social-care/ and https://www.adruk.org/our-work/browse-all-projects/adr-wales-themed-projects-major-societal-challenges/.

Connecting Society is brought to you by ADR UK (Administrative Data Research UK). Find out more about ADR UK on our website, or follow us on X (formerly Twitter) and LinkedIn. This podcast builds on a pilot series known as DataPod, produced by ADR Scotland.

Transcript

Shayda: Hello, and welcome to Connecting Society, a podcast about how everyday data can shape our lives. I'm Shayda Kashef, Senior Public Engagement Manager for Administrative Data Research UK, or ADR UK to me and you.
 
Mark: And I'm Mark Green, Professor of Health Geography at the University of Liverpool. We are your co-hosts and guides around the wonders of administrative data.

Mark: Wow! Episode 4. We've come such a long way in these 4 episodes. I was thinking just about that last night, and in particular, after watching an episode of Sherwood, which I must say is a Connecting Society top TV tip, if we're if we're allowed to say that. But in many of these kind of TV series, there's often a twist, and it sort of comes in at Episode 4.

So I was starting to think on my way in this morning. Should we have a twist? What could be the twist? Are we going to have to start solving murders involving administrative data where we piece things together? Maybe I'm overthinking this. What do you think, Shayda?

Shayda: Very genuinely, don't get me started on true crime. I love a good true crime flick.

Mark: Maybe we'll put that in a series 2 or something like that. We could always diversify a bit more. Well, Shayda, have you done your homework for today's episode?

Shayda: Yes, I did. For the listeners: we were tasked with reading the recent Welsh Government report, "NHS in 10+ Years". The report talks about the key population health challenges facing Wales, including how they are linked to broader factors, such as housing, environment, education, and income to guide the Welsh Government's A Healthier Wales ten-year strategy.

We've added links to these reports in the episode notes for all of you who would like to read more.

I studied bioethics for my master's. So I was really interested in the report's mention of social determinants of health which are non-medical factors like where you live or your work experiences that can influence your health outcomes. What about you?

Mark: Yeah, it's really good. I I really enjoyed the report, and it kind of made me realise that I spent a lot of time teaching about aging populations, but not necessarily thinking about some of the consequences of those in health terms.

So in the report it talks about, for Wales, that we're forecasting that diabetes cases would increase by 22% in the next 10 years, which seemed to me like a big number. I wasn't quite expecting that as a kind of indirect consequence of an aging population.

It feels like I've spent the last kind of 20 years from school into university and into my job talking about aging populations and how we need to prepare for them. But actually, we need to start responding because we're already starting to see these impacts. And so I thought that was really fascinating.

Shayda: Yeah, it's all becoming real now.

I was unsurprisingly drawn to the fact that poverty and social inequalities were framed as health inequalities. I really liked that, and I also really liked how the report flagged that addressing these would need to work in tandem with health interventions to support people living healthier lives overall.

It just goes to show how complex the picture of health and well-being is and takes me back to reading Michael Marmot's work in uni.

Mark: Yeah, I really appreciate that focus on inequalities. You know, that's something that I'm very much interested through my day job.

And it made me sort of think that, are we starting to do plugs on the show? And you know we'll be able to start plugging reports, or what other people do.

Then it got me thinking, well, this could be a great way of me meeting all these stars and celebrities. We could get on someone like Hannah Fry coming to talk about their new Christmas data book out there. You know, this could be my chance to meet some of my heroes and the people I really look up to.

I think I'm probably getting too far ahead of myself.

Shayda: Hopefully, the producers are listening to this. Maybe for Series 2, we can do a segment on "celebs talk data". But for now let's dive into today's episode.

Wales health and care system is grappling with complex interconnected challenges, including, as we discussed, an aging population, inequalities, and the rise of new healthcare technologies and tackling these will require evidence-based policies and strategies, something that administrative data is uniquely positioned to help with.

ADR Wales, ADR UK's sister branch, is already expanding research to access health and care data and is linking it with other data providing cross-cutting evidence around well-being in Wales. And we will explore how all of this fits into some of the health and care issues facing Wales today.

Mark: And to help us do that, we have two wonderful guests with us today. We have Tracey Breheney from the Welsh Government, and Dot Williams from the charity Butterfly Conservation and member of the SAIL Databank Consumer Panel.

Now, SAIL, what's that stand for? Well, it stands for Secure Anonymised Information Linkage. The SAIL Databank is where Welsh data is securely stored, and the consumer panel is a panel of members of the public who advise on how data from the SAIL Databank is handled and used.

Anyway, welcome to the show, Tracey and Dot.

Dot: Thank you for having me.

Tracey: Thank you. Thanks very much.

Shayda: Welcome. Please introduce yourselves and tell us a bit about you, like where you're from and what you do, and please, no technical jargon. Tracey, we'll start with you first.

Tracey: Okay, thank you, Shayda. So, prynhawn da everyone. My name is Tracey Breheney.

And in terms of kind of introductions, really, I'm a director in the health, social care, and early years group of the Welsh Government. And I've worked for Welsh Government, and before that Welsh Office, for 38 years.

So a career civil servant, and a kind of member of the of the policy, professional part of Welsh Government, so very much a kind of policy background, and really pleased to be part of this. Given the kind of years really of working closely with analytical and other colleagues to make sure the evidence does inform policy work that we've done so great to be here. Thank you.

Shayda: Can I ask you a question? What did you study at uni?

Tracey: Well, I had a funny sort of route, really. So I joined the Welsh Office when I was 18.

So straight from A Levels, actually. So, but at that time, they had a scheme where, if you were 18, you could do your kind of university, you could do a course, one day a week. So that's how I did my university experience. It was it was a public affairs course, and I did that over a kind of day-release basis while working at 18, as I said, in the Welsh Office then.

And my career history is very much as someone who's kind of started as an administrative officer in the Welsh Office, and I've worked pretty much every grade, every level through the organisation. So that's my career history.

Shayda: Wow! That's very inspiring, and sounds like if there was one person for the job, it was definitely you.

Tracey: I'm not sure, I'm not sure. I mean, I think there is swings and roundabouts, aren't there, in kind of having that as your kind of route in, really. But what I found is that actually, I've mostly worked on the social policy side of Welsh Government.

So I've done stints in local government for 10 years. I was head of the child poverty unit, and on the poverty policy part of Welsh Government, which was fantastic. And then for the last 13 to 14 years, I've been in the health group.

And I think, you know, having moved around different policy areas, although linked, as I said, because they've nearly always been on the social policy side, has been fascinating, really. 

I think the thing that's really helped me in terms of working at each grade, if you like, and level, is that you have a real understanding of the teams and working at different parts of the team, really. So, it's been brilliant, brilliant.

One of my favourite times was working in the Devolution Unit in 1997 to 1999, which was the—there were 20 or so of us that set up the National Assembly for Wales, when, of course, the Devolution legislation was going through. So all sorts of jobs.

Shayda: Yeah, it must have been very exciting. And I think, having been in this space for so long, you've really seen how it's changed, and probably your experience in all these different teams has really helped evidence how a lot of how so much is linked to health.

And that we really do need to communicate across different themes and different teams to help, you know, improve the lives and well-being of people, and that's pretty much the topic of the report.

So yeah, it's great to have you on. Dot, let's go with you.

Dot: Okay, I've got quite a varied background. As you said, I work for Butterfly Conservation at the moment, 2 days a week, on a special project called "Natur am byth!", which is about saving the rarest species in Wales.

But, more importantly, it's about connecting people with nature because of the evidence that shows that connection with nature is actually good for people's well-being.

But my background is actually in social work and in teaching social work.

I became quite a senior manager in social services, worked in various authorities across South Wales, and worked with lots of people who lived in poverty, and as a result, maybe developed certain health conditions and all sorts of things like that.

I got involved with SAIL—the consumer panel—when it was first set up in 2011. I had started a health journey myself at that point, having been diagnosed with rheumatoid arthritis, and because I was attending hospital on a regular basis, this was being set up. So I got invited to apply, and I've been involved with the panel ever since.

And certainly the experience from a layperson's perspective is—it's so important to hear consumers, patients, whatever you want to call them. People like me, people like you, who may be at the receiving end of the services, that we actually have an input into how those services are delivered and how research can be shaped. So I think the role of the layperson in that sense is really, really important.

How I've ended up in conservation, I do have a master's degree in conservation as well as all my social work qualifications as well. So I'm now lucky enough to combine both.

Mark: I totally agree with your point. You know, if we're going to make a difference to society across a whole range of social and health issues, we really need to be listening to people with lived experience of those issues and not having a kind of top-down imposing of how we think the world works. Because otherwise, it's just not going to be effective or meaningful, really.

Dot: No, and you're not going to actually engage people because they see it as something that's out there that it doesn't actually belong to them, and they're the ones who actually, like myself—I’m the one who has to live with the rheumatoid arthritis and go through all of the conditions and the issues like that.

I lived through the experience of caring for my late husband and that kind of thing. So I’m the one who's at this sharp end. And so—and there are millions like me out there, whether, you know, across the UK. It's our lives.

Mark: Yeah. And everyone has a story to tell. 

So you might be wondering why we have these two wonderful guests on our show, and we'll hear a bit more about their roles specifically as we go through. But they play a really important part in ADR UK, particularly the ADR Wales partnership, as we'll get to.

So, linking up datasets that are held in the Welsh Government resources like the SAIL Databank, which is a way of linking datasets across health, social care, and socioeconomic datasets that we have access to and then feeding them back to researchers who might be able to make the most of these datasets to try and make a real-world difference.

But before we try and tease apart that and that particular reason, we just want to ask our guests one quick question to try and get to know them a little bit better. So just something a little bit fun that we're asking everyone: what is your favorite statistic? So, Tracey, would you like to go first?

Tracey: I've got quite a personal favourite statistic, actually, which is... 90 out of 100 women with breast cancer will survive for 5 or more years. And that's my favourite statistic because six years ago I happened to have breast cancer and go through treatment for that. And I just think that's a brilliantly reassuring statistic. So that's why I would choose that one.

Mark: That's a really good one. I really like that you shared that. Thank you.

Dot: Can I just say thank you for sharing that, because I'm just about to start my journey on that way.

Tracey: Oh!

Dot: So that is reassuring. Thank you.

Tracey: Well, maybe we'll hook up, Dot, after this.

Dot: Absolutely. My favourite one is totally off-piste.

In 2022, the University of Derby and Butterfly Conservation did some research, and they showed that counting butterflies reduces people's anxiety by 9%, which I think is wonderful. So we should all be out counting butterflies.

Mark: I like that one as well. And maybe this because I've not got anything on Sunday, I've got free days, so maybe this is what I should be doing, although it's probably at the wrong part of the year for butterfly counting.

Shayda: Wonderful. Thank you both, and thank you both for sharing something so personal on the podcast. And good luck with your journey, Dot, and very pleased to hear how successful yours has been, Tracey.

Right, now to jump into the meat of the episode. I'm gonna start with you, Dot, if that's okay.

So you, much like many of our listeners, are a user of the health and care system. But you've also been working closely with the SAIL Databank for some time now, so you also have a deeper understanding of how data can be used to support public services.

From your perspective, what do you think are the challenges that face users of the Welsh health and care system, but maybe also just health and care systems generally?

Dot: I think from my various iterations, whether it's as a social worker or as a service user myself, is knowing the pathways, knowing where to start, how to get into those pathways. And this is where more information is actually really important for the layperson.

So that's why I'm glad that we're talking in layperson's terms today. We're not using the technical jargon. Because if you go to a GP appointment or a more specialist appointment, suddenly they're talking a language that a person may not understand, and it can be quite scary. And I think if people are made aware of how important gathering information and data is, how it makes a difference to the individual, and how it can make a difference to other people's journeys, that is really important.

Now, another example from personal experience is that I am going tomorrow to a specialist breast care center.

Now, that was established as a result of people's experiences of being pushed from pillar to post and the whole information that—for women who are going through this—well, I say women, it can be men. The journey, it's nice to have it all in one place. So it's the data taken from people's lived experiences that is shaping the services that I'm accessing now.

Mark: And Tracey, having listened to Dot, and as someone from the Welsh Government who is involved in responding to the challenges Dot’s outlined, but also a much broader range of challenges on top of that. 

The same question, what do you think are the key issues? And are they similar to what Dot has highlighted, which I think is a very good point around complexity of care, accessing care - but what other additional concerns do you have that are really a priority for the Welsh Government at the minute?

Tracey: I think, Dot, that's a brilliant example of the importance of having kind of one stop shops almost that kind of take away all the complexity for the patient, if you like, and just hides the wiring, so that you, as a patient, can go along and have all of the diagnostic tests and results and everything in one place. And I think that's probably the vision. 

It's really interesting that you've used that example of the breast unit, because that's quite a new development. I certainly didn't have that. My own experience was that I would have to go to 2 or 3 different places. And so it's brilliant to see that. You know that that sort of one stop shop is starting to be a reality for people, and I think it's great. 

So I think Mark, in terms of the wider challenges. I mean, they're quite considerable, really, aren't they? And it's not just in Wales that we're facing these. So we know we've got an ageing population, and I think the added difficulty for us in Wales is the kind of socioeconomic circumstances of Wales, you know, in terms of - we've got quite high levels of poverty which obviously impact on people's health and wellbeing. So I think we've got an added set of complexities there which would be similar, perhaps, to the northeast of England and some communities in England. But I think we've got more of it in Wales. 

So it's definitely that ageing population, and no doubt we'll come on to this, but we also know that that's going to result in increasing demand for healthcare services from the science evidence and advice report that you mentioned earlier. We know that we're going to be facing increasing demand, and also that the demand that's coming through the door is going to be increasingly complex because you'll have people older people who have lots of different conditions. So that's really quite challenging in the kind of tight budget context and for service planning there, where perhaps we've had service planning which has been on a specific condition basis, whereas now we'll have to have services that can deal with. I think the word is comorbidities, but it just means someone with lots of different health conditions.

Mark: Yeah, it's both a success of healthcare that we're able to allow people to live with conditions much longer.

And also this problem that it's created is that you have people with as and increasing numbers of morbidities. So morbidities being conditions to our as a more lay friendly term. So things like cardiovascular disease or lung cancer, for example, it creates a different challenge. And one that we don't always have our heads around, because we don't know how to treat combinations of diseases. I don't know how you how you plan for all of this. I'm quite glad I don't have to try and plan for all of this.

Tracey: Yeah, I mean, I think that's where understanding what that looks like is so important. So we knew from the the report that you mentioned at the outset. I think one of the lines in there says that you know there'll be an increase of people with 2 or more conditions, and that people with 4 or more complex conditions is expected to double by 2035. I mean, there was some quite stark statistics and data in there. What we've done is look at the report as a whole, and there's a lot more in there, as people will have read, no doubt. Which also has allowed us to look at the conditions themselves. So there are some conditions that are likely to increase faster in terms of what we perhaps would have expected. So things like dementia, heart disease, you know, hypertension, anxiety disorders, so mental health conditions, diabetes. 

So it helped us to understand the nature of those conditions, and then to also understand how we could look at the prevention. Because a lot of those are preventative if we do some work upstream. So it was a really important report for us, because it gave us this body of evidence, along with other wider national and international evidence that as a policy group within government we were able to look at and think, right, how do we need to now look again at the policy actions that we've got planned to respond to the evidence coming out of that report. And that's what we've been doing, really, for the last 10 months or so.

Shayda: I'm really glad that in addition to highlighting the sort of issues that have that people are facing with health and wellbeing, that the data is uncovered, that also there is a plan to address these issues with preventative measures and looking for solutions. And as we know from how Welsh government works with the SAIL consumer panel that we need different heads, different levels of expertise involved in creating solutions, so it would be really great to learn a little bit more about how Welsh Government works with researchers on finding solutions, and also to hear from Dot about how the SAIL consumer panel has been working with researchers as well. So I'll take it to you first, Tracey.

Tracey: Yeah. I mean, we are incredibly lucky to have the kind of SAIL database in Swansea University and working really closely with researchers and academics from there on a fairly regular basis across government.

I was looking at an example recently, actually, and it links to the prevention discussion we were just having, and about intervening upstream that I think really brings this to life, really. So we've got a service in Wales called Care and Repair Cymru. And it's basically a housing support service. And the records from Care and Repair Cymru have been deposited in the in the kind of SAIL database and from the analysis of the data from that we were basically able to assess the kind of risk around care home admissions for almost a hundred thousand service users, all with different levels of frailty, by looking at the longitudinal data in there against a control group who'd not received any support from the likes of Care and Repair Cymru.

And what that showed was that that organisation was really successful in preventing care home admissions for moderately and severely frail people. So that was really powerful data and evidence that could then inform a decision to protect the funding for Care and Repair Cymru, and really compelling evidence.

Then that means that we're preventing admissions to care homes and hospitals which would be far more expensive than increasing the funding to the likes of Care and Repair. So I thought that was a really powerful and compelling example of how you know using the SAIL database, can help us in making those decisions in a very evidence based way. Hope that's helpful.

Shayda: Yeah, extremely helpful. And a great real world example of how data was used to save a service and help people. 

Dot, you work a lot with researchers via the consumer panel, possibly in your work with the Butterfly Conservation as well, but specifically around the consumer panel. What's your relationship like with researchers? And what advice could you give to researchers who are looking to do more public engagement?

Dot: I think, over the... gosh, nearly 13 years now since the panel has been in existence, researchers have grown to respect our perspective more because we are often talking from lived experiences. Either our personal lived experiences or family members' lived experiences. And some of us actually worked in health and social care as well. 

The whole issue now is educating the new researchers coming along about listening to people like myself, because you may not want to hear this, researchers, but sometimes researchers don't seem to live in the real world. They seem to be almost wanting to do research for research's sake rather than looking for research that is going to impact people's lives and make a difference in the future.

As I said, I'm on the Information Governance Review Panel as well. So there's a small group of people that make... somebody from Welsh Government, somebody from the Health Board, various other people on there. My voice is equally as important as everybody else's voice on there, and I will look at something that has passed by our health colleagues because they just accept it. They accept the language and things like that, whereas I can go in and say, "Well, what does this actually mean? Have you actually spoken to somebody who's going through this?"

It is really, really important that we are listened to. As I said, over the years, researchers have come to us more and more. We actually get people wanting to do some research using the SAIL database actually ask to come to present to the panel because they want our input. They want our perspective on shaping the research question sometimes, because they've got it in their own head, but there's something in their head telling them, "Is this going to make sense to people?" So that's where we actually have a really important role, I think. And equally, I think the same with Welsh Government. Welsh Government is pretty good at asking the end user as well. So it's not just about the researchers, it is about Welsh Government as well.

Tracey: Yeah, I think, Dot, I completely agree with that. I mean, before I was in this role, actually, I was the Deputy Director for Mental Health and Substance Misuse, and like most policy areas in Welsh Government, you know, we're really committed to having a kind of lived experience voice in as early as possible, really in the kind of policy process. 

And I know certainly in those areas, it was absolutely invaluable to have people with lived experience help us, as we kind of, you know, shape policy proposals, strategies, whatever we were doing. And what we did have to do, though—we always do have to do particularly when dealing with people who are, you know, in the midst of, you know, grappling with substance misuse, for example—is put the right support mechanisms in place so that people can properly engage. Because we have to make things easy, I think, for people to be able to engage with the process, or as easy as we can. But it's always better policy if it's being informed by the end user, I completely agree, because otherwise we'll just develop brilliant words, and they won't be able to be delivered or they won't be successful.

Dot: But it's also important to recognize that maybe the SAIL panel is just a snapshot of a few people, and it won't be the same lived experience for everybody. We cannot speak for absolutely everybody. We can speak from our own experience and our experience of working with researchers and things like that. But, you know, it does have some limitations. But it is important to have it there.

Mark: I would encourage anyone really to take your ideas and your thoughts about research projects to as many people with lived experience as possible, because from my own experience, the insights you get are just so powerful and so important.
 
Now, we are a data podcast, so to kind of bring things back around to that, and I'm kind of aware that Producer Chris is probably giving me the evils off-camera about not starting a turf war with our kind of equivalent organisation, HDR UK, who do the health data side of things. But could we talk a bit about the sort of data that's available? 

So, Tracey, what types of data do the Welsh Government collect, and in particular, thinking about datasets that can be linked to health data that can make them really powerful? 

Tracey: As you say, data is absolutely essential, really, in kind of evidence-based policymaking. And, you know, we rely on a mixture of sources. So, we'll have things in each policy area where you may have commissioned specific research to inform and data sources. And then we've also got access to things like, you know, the National Survey, for example, and Public Health Wales surveys, and those sorts of information sources which we can look at alongside more specialist or bespoke data that we look at. 

So yeah, I mean, as you say, that's an ongoing process, really, in each of the policy areas within government. But certainly, as someone who really has the responsibility for A Healthier Wales, which, as you said at the outset, is our 10-year health and social care strategy for Wales, it was really important, just at the end of last year, that we took stock of what the up-to-date picture looked like in terms of information, resources, and evidence that was out there. Because there are four years left of A Healthier Wales, and ministers, absolutely understandably, are really keen that we focus on the delivery of that strategy. 

And so it was really important to look at all of those evidence sources at the end of last year, and the SEA Report was absolutely pivotal in that. To see how we needed to change some of the policy actions. So an example would be around digital, for example. So the policy action that we've got in A Healthier Wales around digital and the provision of, you know, all sorts of innovation and digital services has been significantly strengthened because it was clear from the information coming through that if we are going to realize the vision of having more community-based care, more people remaining at home and having care at home, you know, digital has got a massive role to play in achieving that. So, you know, that’s just an example of where, right across the health and social care actions, we looked at the SEA Report and, you know, made different decisions about different areas. 

So that's the kind of thing. And all of that has come from the data. It’s come from the data that’s come through from the likes of the SEA Report and others.

Shayda: Thanks, Tracey. It’s very encouraging to hear the response to the evidence. 

I’d like to ask a question to you, Dot, casting your mind back to before you joined the consumer panel. Were you surprised by how this data is used for research, for instance, the data that's collected from your GP or your employer being used for more than just health services or employment, but can be used for real-world outcomes?

Dot: Absolutely. And I think that’s one of the big issues, is that most people are totally unaware of. But that's what's actually happening, that, you know, each visit you go to the GP or whatever, there's something being recorded, and that’s being fed into a system. But then that system is actually being used to shape services and policy and things like that to help people in the future. So, I think there’s a big campaign needed to actually inform people as to what's actually happening because, as far as they’re concerned, you know, you go to the GP, they write your prescription or whatever, and that’s it. They don’t realise that that information goes elsewhere, and what elements are captured, and how that information is actually captured alongside maybe your postcode and various other things, so it can build up a whole picture, not just of your health, but of your wellbeing, your socioeconomic elements, and that. And without all of that joined-up thinking, it’s very difficult to actually shape how services are going to be developed. 

But for me, it’s about that informing people, and informing them in a positive way, because there was a big fuss in England, wasn’t there, a few years ago about storing data, and those of us in the SAIL Databank would sort of say, well, why? Because, you know, we understand it’s all secure and anonymised. People were afraid of it being used for nefarious purposes, I guess, but without it, we wouldn’t have the services that we have now. We wouldn’t have this wonderful new breast clinic. We’d still be going from pillar to post around different hospitals, different places like that. So, to give people some real-life examples would actually be a benefit, I think: "without this, we wouldn’t have had this".

Shayda: I think that was beautifully put, and I actually put in my notes that I reflected on the breast cancer clinic as well, because it’s a really great example of how, Tracey, when you were going through this, the data you had to do your own administration.

What I imagine is, the GP wasn’t talking to the hospital, wasn’t talking to the specialist because the data was being collected separately and not connected, whereas for you, Dot, now, the data is being linked together into one sort of master dataset. And that’s the sort of business that we’re in at the moment, is sort of gathering these individual data sets, you know, and handling them responsibly and bringing them together to form a full picture.

And with that, I want to say thank you to both of you. Another fascinating conversation. It’s been great having you both on. And the way that we typically end the podcast is we like to ask our guests what the point of all of this is. 

So, if we could just sum up what we’ve been discussing, what it all means, and how to make lives better. Can I start with you, Tracey? Just a couple of lines: What changes would you like to see with the health and care system, and what would benefit patients the most?

Tracey: Yeah, I mean, you know, we’re really keen, really, to focus on, as Dot said, you know, we need to have a focus on the patient and the individual person. And so certainly, for us, having - through ADR Wales, and other sources - greater understanding of inequalities that exist, and looking at that through an intersectional lens, so that we can properly understand how we provide services, then that fits around and the needs of different groups, I think, and so that we don’t have a kind of one-size-fits-all because that doesn’t reach certain underrepresented groups in particular.
 
So I think doing some more work in that area will really help us as we take forward A Healthier Wales.

Shayda: Brilliant. Thank you both so much.

So Mark, what were some strong themes that came out of that conversation for you?

Mark: Yeah, for me, I think it’s that there’s still a lot of work to be done in understanding the baseline of what are the issues facing today and identifying those gaps that data can contribute to. And also making sure that we embed the lived experiences of the communities who are facing many of the issues that we’re studying or researching or trying to solve, If we’re going to be able to make meaningful and valuable decisions that will hopefully benefit the health of everyone.

Shayda: Well, that's it from us today. Thank you again to our guests, Tracey and Dot, and thank you for listening.

Mark: Until next time, stay curious about how your everyday data might shape society.