E6: Is Scotland’s Patient Data the New Oil?

Kicking Off with Golf: A Scottish Weather Adventure Hey, welcome to the long Game. We're on a mission to demystify the science that shapes our lives and to unpack how great ideas built here in Scotland become real world medicines, devices and new companies at the cutting edge of life sciences. Speaker 2 And Ross, because we share a passion for golf as well as science, we know progress is a game of patience. No hype, just a long game. Speaker 1 Well, hey everybody, I'm Ross Kagan, Regis Professor of Precision Medicine at the University of Glasgow. Speaker 2 And I'm Sandy Weir, tech innovation leader and strategic program manager, joining from Edinburgh. Speaker 1 Hey Sandy, it's lovely to see you again. It's been what, 2 days? Two days since we saw each other. Might want to catch up our audience on our Sunday. Speaker 2 We've dried out a lot since Sunday, which is a good thing because we had the pleasure of playing golf down in an Aberdare, which is a beautiful course. I really recommend it to people. Excellent golf course, but we had every sort of weather possible in one, one in one in four hours, torrential rain, beautiful sunshine, more torrential rain, hailstones and then to capital of Ross. What did we get? Speaker 1 We got what I thought was not possible in Scotland because I've not seen one yet. A thunderstorm. Speaker 2 Thunder and lightning, yeah. Speaker 1 Yeah, yeah, Thunder and lightning. And as a bonus, instead of rain, we got hail. How does that work out? And The funny thing is, do you remember about halfway into this, we actually thought, oh, the weather is amazing. It's all cleared up now and it's been beautiful. And we were shedding. Yeah, layers and. Speaker 2 My really? Hat came off, yeah. Speaker 1 I know exactly. They had to send a guy out with one of those horns. Yeah, where he hits the button. And just to tell everybody you gotta get off the course now because you're all holding little lightning rods. Speaker 2 It was crazy. The only good thing the blessing Ross, was that none of us were on to a course record as we had to abandon the 16th green if we've been on a course. Speaker 1 You mean a lower course record? You mean for the least the lowest score? That's what I. Speaker 2 Meant just what I meant. Speaker 1 Just clarifying. Speaker 2 Yeah, no, it was a ton of fun. It was a lovely place. And yeah, I'm. But, you know, there's so many lovely golf courses out there, we just got to keep exploring. I think that's just one of many. I look forward to going back. But you know, there's, there's just too many to, to, to, to focus all our energy in one place. We'll we'll find another one soon. Speaker 1 It's true. Yeah, I know. I would love to go back there someday. We'll we'll take a pause. But I think just for the PTSD of the 17th hole, yeah, I'd like to go back there and remind myself how beautiful the game is. Speaker 2 Indeed, just before we move off this point, Ross, I just want to remind you, you at one point you said my driving was metronomic on I'm taking that I'm winning that so that I was very. Speaker 1 Driving was brilliant on. Speaker 2 Sunday, I was so pleased. That was nice to be able to put it anywhere I wanted. But that was good. But I think if we combine the best parts of our both of our games on on Sunday, I think we we would have been pretty, pretty hard to beat. We were. We were pretty good across the game, actually. Speaker 1 Yeah, yeah, I would agree with that. I think I did all right with the irons. And really honestly, dude, if you can't brag up on your own podcast. Exactly. Speaker 2 Exactly. That's so true. And your team of irons that you mentioned earlier, they were excellent. Speaker 1 As well. Oh yeah, that's right. They really. Speaker 2 Right. Yeah, they were. Speaker 1 Flipping things out of the bunkers? No problem. So on the long game, we explore the collision of cells, code and capital in the Scottish life sciences sector. Is Scotland's Patient Data the New Oil? This is a weird transition. Today we are today we are talking about an asset that is invisible but is arguably the most valuable resource that Scotland possesses. More valuable than the whiskey and casks, more valuable, potentially more valuable than the oil left in the North Sea. And I know that sounds unlikely, but yeah, what are we talking about, Sandy? Speaker 2 Yeah, it seems and we've given everything that's going on in the world, it seems a bit, a bit strange to be talking about oil. But anyway, we're talking about our health data. Of course, that digital footprint, every cough, every prescription, every scan MRCT, the the, the very genetic quirks that we that we have. It's all about our health data. Speaker 1 Yeah. Now the premise of today's episode is a question that is dominating actually the boardrooms and the Parliament right now, as I understand it. Is Scotland's patient data the new oil? And if it is, who gets to drill for it? Speaker 2 It's a massive topic from my side of the fence. In the tech industry, data really is our our raw material. We use it to build our AI applications. We use it to develop the workflow and productivity, improving smarts, the diagnostic insights that we get from our, our, our next generation of AI models. It's all created and all depends on, on that access to that data. But Ross, nobody knows more than me the reactions that we see from, from, from members of the public. You know, sometimes when we see people get very nervous when they hear the words private tech company and NHS medical records in the same sentence. Speaker 1 Yeah, I know. And you know, we're going to probably talk a lot more about this over the podcast because you and I have discussed this in some detail and I'm not sure that people feel the way that the perceptions are are gained, but we'll talk about that. So today I'm going to share a surprising and kind of mind blowing secret about an archive of DNA that Scotland has been keeping since 1965, which is almost to the point when I was born. Then Sandy explained to us how companies actually use this data and how the Scottish Government is trying to monetize it in 2026 while keeping the public's trust. So sausage rolls down. Yeah, I'm looking at you, Sandy. I don't know why I'm saying that. I just ate a sausage roll and let's get into it. The Unparalleled Value of Scotland's Health Data Yeah. So Ross, you're going to set the scene for us. So you know, why, why is Scottish data suddenly the hot topic for global tech companies? What's what's bringing them here and why don't they just buy the data from the US or or even just work with a greater scale of data that's available in in NHS England, for example? Speaker 1 Yeah, of course. So, and I actually do know something about this because I've come across it of course, when I was in the US. So a couple of reasons. First of all, well, basically stability and this magical Kai number. Kai. Chai number Kai. I would say Kai. Yeah. This is a number that every Scottish, Scottish citizen receives at birth. It's the community health Index. And that connects us to the NHS. And in fact, when my wife Yumi and I moved here, before we arrived here, we paid into that system so that we could take advantage of it. And it was, you know, one of the things that brought us here. We love it. Anyway, in America, the health system is not like that. It's a, it's a big fragmented mess. And I'm sure everybody's heard something about the American health system, but I got to see it upfront and personal when I was running a clinical trial and just getting patient records from patients that were not in our system at Mount Sinai turned out to be a real problem. So anyway, when you change jobs in the States, you change insurance, your medical records get fractured into pieces. It was only recently that you even could get it online. I remember actually having to go, we're talking about 7-8 years ago, having to go to a desk, get my physical records and then go over to another hospital with my records in hand, which is pretty bananas. So in Scotland we have a stable population, so they don't move around as much as they do in the States, which is helpful and, and a completely centralized NHS. And we have that magical kind number, all of us. Speaker 2 Yeah. So, Ross, so this is really important. And we mentioned that in a, in a in a previous pod, that's that 10 digit number that's on every hospital letter that comes through the letterbox, right? Speaker 1 Yeah, to me, that's what's a magical about this because it links everything. It creates basically what as a researcher I like to call Cradle to grave patient record, which I cannot emphasize is super, super valuable. And again, in our podcast going forward, we'll be talking more about this, the idea that we can actually track a patient's health story from the day they're born to the day they die. We're talking about primary care hospitals, pharmacies. You know, for a cancer researcher like me who's always looking for patterns and trying to understand, relate them to treatments, this longitudinal data is absolutely goldmine. And I think pharmaceutical companies very much feel the same way. Scotland's Hidden DNA Archive: A Vault of Genetic History Yeah. But wait, it's not just the digital records, is it? You mentioned a very special archive earlier. Do you want to expand? Speaker 1 Yeah. And yeah, we came across this. I guess I came across this when we were together at the Living Lab, and I first learned about this. This is sort of a physical manifestation of this cradle to grave. If you were born in Scotland after 1965, the government has a piece of your DNA in a vault. Speaker 2 That sounds incredible. You got to tell. Speaker 1 Us more about this. Yeah, it's called the Guthrie Card Archive. And so a few days after a baby is born, and probably many parents will remember this, a midwife does a little heel prick to test for rare genetic conditions and they take 4 drops of the baby's blood onto a piece of cardboard called a Guthrie Card. What most people don't know is that Scotland keeps them. We have an archive of over 2 and a half million of these cards, as I've got to hear quite a bit about them. It's the largest, longest standing collection of dried newborn blood spots in the world. Speaker 2 Yeah, and, and, and actually I, I have to confess I do know a little bit about this. Remember, I know I did. I did work in the NHS Once Upon a time. So, so that Guthrie card archive, it's actually stored in a secure vault within the Scottish Newborn Screening Laboratory, which is situated and maybe a bit too much detail for everyone and hope I'm not giving away too many secrets. It's situated in the laboratory medicine building in the Queen Elizabeth University Hospital in Glasgow. And sure enough, you're absolutely right, Ross. They have blood spots from almost every working age adult in Scotland. But the big question is how can researchers actually use that data? Speaker 1 Yeah. So the answering that question, of course, we'll take more than just one podcast. And like I said, I'm sure we'll dig deeper into it. I mean, until recently, there's actually a moratorium on doing anything with it. But recently the Generation Scotland project did a feasibility study. They took the Guthrie cards that were up to 38 years old. They took out a bit of the DNA. They successfully matched genetic markers to the adult health systems of those same babies. Basically, the punchline is they could show that these things were preserved really well. They could even look at what are called epigenetic markers, which is basically the chemistry that your body puts onto its DNA. Little markers, can see if the mom smoked during pregnancy, all sorts of crazy stuff. Yeah, it's. Speaker 2 Incredible. Yeah, absolutely incredible, Ross. But as a as a, as a citizen and as as guests, as one of these babies that has been had my, my, my heel pricked in the past, it does feel a little bit dystopian. Speaker 1 Yeah. And so I, you know, I feel like in some ways the way we're introducing this makes it feel a little a bit of drama to that. And there is an ethical tightrope. And I have to say Scotland until now has really fallen on the, you know, let's let's put up a wall type rope. So actually Scotland has been doing the right thing because just a little side thing of you and I have discussed this quite a bit when people are asked if they would share their data de identified. So nobody gets to know who the data is from. And you have, let's say you you're in for a cancer, you have a tumor, they take a biopsy and they ask you, can we use this for research? Can we share this with companies to develop drugs? My experience is that almost everybody says yes, because when you have something bad happening to you or scary happening to you, you like to think that you're able to help others. But of course, there's an element of trust built into all of this. You really don't want people running around showing your data with your name so that this cannot happen. I just want to be super clear on this. So. So anyway, so Scotland, knowing all of this, ran what they call it a citizen's jury to gain public opinion. And as I said, not surprisingly, the public basically said, sure, you can use our blood spots for health research as long as you keep strict ethical oversight. And we always have the option to opt out, which everybody always does. Basically, people want to cure diseases. They just don't want their data sold to the highest bidder. They want it to make sure that if you're going to use this to build a BioMed economy, it has to be done responsibly. It has to be done with the idea that at the end of this road, it's not just people making money, it is people getting better. It's new treatments, basically. It's cool to build a biotech economy as long as it's done responsibly and done for the benefit of the Scottish people. Secure Access: How Companies Use Scotland's Patient Data So, and this of course, takes us to the business side of it because it's a scientist. I'm always going to be like, yeah, let's get more data and let's run amok with it. So how does the company actually get access to this? Speaker 2 Yeah. And and this is where the landscape is really radically shifting right now in 2026. And the government realizes that they're sitting on a collection of resources that could not only revolutionize healthcare in this country, but also bring massive investment to the Scottish economy. Speaker 1 Yeah, but I'm going to assume that you can't just pop a spreadsheet in an envelope and ship it off to a biotech startup. Speaker 2 Yeah, absolutely. You know, and, and this is where organizations like Research Data Scotland or RDS come in. They're an independent charity. They were set up by the government, their entire focus as part of their 20252026 business plan. It's all about unlocking Scotland's data and maintaining public trust. So we also have in, in Scotland as as part of this engagement, the the safe havens or our and trusted research environments. You might remember Ross I I mentioned the amazing Scottish Safe Haven Network in one of our previous discussions, right? Speaker 1 Yeah, yeah. So I'm still a bit on the learning curve on this from again, from a work in the living lab as a basic researcher now learning about all this. So explain what a safe haven is to us lay people. Speaker 2 Yeah, sure. And, and again, this is, we're not going to cover all of this in, in detail today, but if, if I start off and, and you know, the, the, the safe havens are, are kind of synonymous with trusted research environments now. So if you imagine, you know, highly secure virtual digital reading room, if a company, say my own company kind of medical or, or an EI startup wants to train an EI algorithm, say to detect lung cancer, for example, wonder who could be working on on that in collaboration. Ross Yeah, that's our our living lab focus, of course. So just to give you an example, an example, they get down to the NHS and they actually access the data in a secure way. So they don't just use their laptop to get access to that data. They need to work with the data under strict access arrangements and really tight governance really to make sure that we protect the data privacy, data security, the data safety. So the the safe havens provide this detailed governance framework and they determine the data that will be curated and shared for for research. They applied tools to make sure that that data is is properly anonymised so that at the point of access the names are stripped out, the dates are jittered, the kind numbers are scrambled in a special way. I don't want to get into the technical detail for the moment, but but trust me, that's all, that's all secure. And then our researchers, our commercial researchers, our academic researchers, there's no exceptions, Ross, not even for Regis professors, I might add. You have to log securely into the appropriate research, trusted research environment the and then you bring the algorithm and the development environment to the data. So that's the really important part. You don't bring the data to the development environment. You bring the development environment and the algorithm to the data. And there you train your model, you run your verification and your validation tests. And they, and they, they are allowed to, to take the results out only after careful review to the satisfaction of the safe haven data manager. So that it has to be in lockstep with the governance that the the safe haven networks are providing. And that of course, that anonymized patient data that's never allowed to leave the building. Think of it as Hotel California for your patient data. Speaker 1 So trying to remember the lyrics so. So basically. So the oil never leaves the vault basically. Balancing Innovation and Public Benefit in Data Commercialization Exactly. Yeah, so. Speaker 1 Set up metaphor. Speaker 2 Yeah, maybe we'll change the outgoing music. No, we can't do that for copyright say, but yeah, yeah, so the. Speaker 1 Oh well, like that. Speaker 2 This so the Scottish Government, they're, they're pushing hard to push to really to try and speed up this process. So recently they've launched the researcher access service through RDS to try and, and speed this up and, and not obviously obfuscate the, the governance, but help to, to try to manage the, the red tape. And they've also set up a pilot programme specially funded for targeting Scottish SM ES to use public sector data to build these new AI products. It's really exciting. Speaker 1 Yeah. Well, but also, you know, in 2026, the NHS needs innovation. I mean, we all know the challenges that they're facing right now, both in terms of treating people properly and also in cost, right? They need innovation. Speaker 2 Yeah, desperate for innovation. That patient benefit is also, of course, the economic benefit as well. So it's that both our health and wealth agenda, so that innovation, not just improving our, our, our health as a nation, but also contributing to our, our wealth as well. And in June 2025, the Scottish Parliament passed amendments to the Care Reform Bill to create an integrated digital patient record. And it's all moving towards this digital front door, an app for patients. But the core commercial debate, I guess in in this year, in 2026 is the idea of sovereign national data trusts. It's our data and it be, but it has, you know, massive draw for huge companies, biotech companies. So America farmers companies are really interested to use this this access to this data. So if our data is going to be used in this way and, and U.S. companies are going to create multi billion dollar drugs, for example, using Scottish NHS data, what do, what do we get out of it? Do we get preferential access to, to those drugs afterwards? Is there some sort of perpetual royalty? Do we charge access fees to fund our hospitals? I think these are the big questions of how do we, how do we run that? How do we get, how does that benefit and come back to the to the public and what's that patient benefit? Speaker 1 No, absolutely. And you and I and my colleagues and I've had this conversation quite a bit. So to be clear, when to to so to help bring home, you know, in my world how important this is, this pipeline, this kind number and so on, this scientifically is why I'm here. So when they came and asked me if I would, you know, leave the States and come here and science over here in Scotland, pretty much the first thing they talked about was access to this sort of data and something I just could not get in the state. So it really is unique and it really can help solve a lot of health problems. But as you say, if we're going to do that here, we need some tough negotiators to make sure that Scotland taxpayer sees a return on that investment. This is, you know, this is, this belongs to Scotland and it needs to, to to to help us, you know, build a, a new more independent next generation. Speaker 2 Yeah, precisely, Rost, I couldn't agree more. And you know, if we look at the UK, we, we have 14 of the the top 100 life sciences universities. We're, we're already home to, to big pharma companies like AstraZeneca and, and GSK. We have a, a spectrum of successful biotech and Med tech companies. You know, big and small companies are based here, but unfortunately we're notoriously bad in the UK really successfully turning academic research, the brilliance that's happening in our in our universities into commercial success. That you really, you know what resolving what we call the translation barrier. And and actually we should probably give some special consideration to that problem in a future podcast. Ross, we should come back to that question. Speaker 1 I agree. Speaker 2 Anyhow, I think the key the key thing that we're we're struggling with is, is how to commercialize. But by treating data as a sovereign asset by charging for access but never selling ownership. So retaining that ownership, we could help to fund the NHS of the future just as long as that charge doesn't become burdensome tax on commercial innovation. So I think this is where this careful balance and the certainly the direction and the and getting the, the testing the water and getting that right is so important from from a governmental perspective. Speaker 1 Yeah, I, I completely agree. And I just, I cannot emphasize how important this is. Obviously oil was, you know, a recent way for Scotland to move itself forward, but that's now become, that's now shrinking. This could very well be the future of Scotland. So hey, Scotts, if you want to build, you know, a new economy, if you want to have become more independent and so on, this is that path. But Sandy, as you say, it has to be done carefully and we have to make sure that Scotland truly benefits from this. But, you know, we have to also be bold. Now is the moment we what disadvantage that we have won't last for forever. Now is that moment. The rest of the world is beginning to assemble their healthcare data. So you know, it's a it's it's it's basically it's a moving thing. But right now I think we have a we have a, a key to help really improve healthcare both in the future with new treatments, but also right now in putting money back into our healthcare system. And so is this a win win? You know, sometimes you have a moment where you can make the pie bigger and not just have to divide it in different ways. This can very much be that if we do it right. Speaker 2 Yeah, I mean, it's been a great analogy and and it really helps to to make the whole problem accessible, thinking about it this way and thinking about data and and, you know, oil and what the importance of that's been to our economy historically. Personal Joys: Entrepreneurship, Tartan, and Future Plans But I think Ross may be fine to end the heavy stuff for today. Let's bring it all back down to earth. Too much discussion of hydrocarbons in the news this week for us to continue this type of work conversation. It's time to to to close out the show and to think about We Better Joy. Speaker 1 Yeah, Yep, we bit of joy. It's that's our weekly segment where we step out of macroeconomics, science, disease, how we die, things like that and focus on something a little more positive. So, Sandy, tell me, what has brought you a wee bit of joy this week? Speaker 2 Well, I've had a lot of fun this week, Ross helping my son to set up his own startup. So it's not in biotech, it's not in medtech. It's very much in, he's building a website he's sell selling vintage golf clothing. So it's, it's, it's something that he started at, at uni in, in his third year. And he's been bootstrapping that that company and he's finally sort of moving into an office that he's located nearby. And I've been helping him set up in there and it's been super exciting. And it's the sort of cherry on the cake was that he was successfully awarded recognition an award as part of Best University Entrepreneur and start up this year. So it's fantastic. So yeah, he got that award this week and it was lovely to see him get that. That was it was really nice. Speaker 1 That was so cool. Also having his dad help help. Speaker 2 He's going to hate me talking about it this way. Speaker 1 He shouldn't. He shouldn't. You're doing a little advertising, free advertising. Speaker 2 Yeah, he's learning. So. Speaker 1 That's he's. Speaker 2 Learning a ton around digital marketing and, and really that's at the heart of and sort of commercial challenge that he's got and it's fantastic to see him absorb all that. Speaker 1 Yeah, and I know from our conversations how super proud you are of him. So yeah, that's so cool. I'm sure I will wax on about my daughters at some point, but not this week. Speaker 2 But tell me, Ross, what's been what's been great for you this week? Tell us about your your wee bit of joy. Speaker 1 Well, Sandy, for my wee bit of joy, let's talk about tartan, which I have to say I am wearing right now. OK, so I'm breaking a rule. You never wear fine patterns and on a podcast. Yeah, I know something. Speaker 2 Because that one. Speaker 1 Yeah, yeah, yeah. I usually do, but because they tend to more things like that. Think about all this stuff anyway, so I've been thinking a bit about tartan as you know, part of a, a Scottish identity. This tartan here, it's a classic, what's called a hunter style tartan. So it's more subdued. But actually if you could zoom in, it's got little diagonal cross stitching. Maybe I'll put a picture into the podcast and show a little bit about what I'm learning about tartan. So, you know, Sandy, I'm sure when you think about tartan, you think about Outlander. You know, that whole Outlander vibe. Never see that guys marching, right? Me neither. But my mother and my sister, they love it. And because I'm in Scotland, they keep asking me about him. Like I, I, I don't, I, I don't know anything about it anyway. But for me personally, tartan is basically a middle finger to the man, right? And that's what I want to talk about. So apparently back in the 18th century, after the English crushed the Scots at Culloden, those long bows, ma'am, they made wearing tartan illegal, which I didn't realize. So of course, the Highlanders took pride in wearing it illegally, which I loved. So basically they use this to make sure they weren't erased, which, you know, that's so cool. And then you Fast forward to my time, my world, the first time that I even I think heard the world where tartan because my world, it was Plaid plan, but tartan was Vivian Westwood. I remember she would tear, tear up the clothes. She would put safety pins in it. I very much remember, you know, Sex Pistols and Sid Vicious taking those safety pins and sticking them in itself and all the things that I would not have thought of doing with those safety pins. And then later, because with my family, I kind of like, you know, fashion, things like that. Alexander McQueen, he had this just amazing, I don't know if you've seen it, this insane Highland rape collection, which was just pretty amazing. So that's my wee bit for this as a tartan. It looks good on a throne. OK. A lot of a lot of royalty absolutely love tartan, but it also looks good in a mosh pit. And for me, it kind of, you know, I bought this shirt as soon as I signed on the dotted line to come to Scotland. The first thing I did basically was to buy a tartan shirt and decide I'm going to get more tartan and, you know, helps me connect a little bit more with Scotland. And last thing I'll say to that or bring it back to my family is we've actually talked about, especially my daughters and I had talked about creating our own family tartan, which apparently you can do and you can register it. In our case, of course, it will be black stripes on black. But I'll, I'll, I'm sure I'll bring a pattern of it soon. Yeah, to the podcast. That's. Speaker 2 Fantastic Ross I love, I love that. I love the fact you're going to have a family tartan. I think the only place that I've seen that we're tarting can really go wrong is in a carpet. And I, I'm, we're going off at one now. But I stayed in a hotel recently where there was a very, very vibrant, sort of heavy, sort of bright Stuart, kind of classic Stuart tartan on the throughout this hotel. And I joked with my wife in one morning that I'm not sure if we should go to breakfast or follow the tartan carpet to the to the end of the road and find our our wee bit of shortbread at the end. Speaker 1 All right, so for you Americans, I'm going to have to deconvolve that statement at several levels. What's a Stewart tartan? What's a short bread? No worries, we'll get we'll get to all of that. We'll cover all the I know, I know, I know, I know what all that is and yeah, all this. So that's that's pretty much our wrap up today for the long game. So, Sandy, tell us, what do we have coming up either next week or coming up soon? Yeah. Speaker 2 So we're next week, we're going to look at the infrastructure crisis. We have the data, we've talked about that today. We have the startups actually, we're really, really good at creating startups in the UK. But do we actually have the physical lab space to put them in? I guess that's something that the sort of wet lab bottleneck that we've talked about, Ross. So I think that's going to be part of our focus of our next podcast. So I'm looking forward to speaking to you about that. Speaker 1 Yeah, cool. Yeah, me too. So until then, stay rebellious, stay tartan, and keep playing the long game like. Speaker 3 Blueprint set No Fear playing out The long game, the long game, the long game, The long game, the long game, the long game, the long game.