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The Laura Dowling Experience
Numbers Behind the Diagnosis: How Cancer Data Shapes Our Future
Cancer has overtaken cardiovascular disease as the leading cause of death in Ireland, yet our mortality rates are falling faster than anywhere else in Europe. What's driving this paradox? Professor Deirdre Murray, Director of the National Cancer Registry of Ireland, pulls back the curtain on how cancer data is transforming healthcare in this country.
Every year, the Registry captures data on approximately 24,000 new invasive cancer cases, plus 11,000 skin cancers. While this might sound alarming, Murray explains how this comprehensive collection method actually provides Ireland with more accurate statistics compared to countries that only sample portions of their population. The registry tracks three vital metrics: incidence rates, mortality figures, and survival statistics – all essential for effective cancer control.
The conversation takes fascinating turns through Ireland's screening programmes, where cervical screening has already begun reducing cancer incidence, and the revolutionary impact of the HPV vaccine, which is projected to make cervical cancer a rare disease by 2040. Murray dismantles common misconceptions about cancer, explaining why most patients are over 60 despite media portrayals focusing on younger patients, and why early diagnosis remains so crucial: "The earlier you go to get things checked out, the earlier the stage you are diagnosed, the less treatment you're going to need."
Perhaps most striking is Murray's revelation about Ireland's technological challenges. Despite being a tech-literate nation, Ireland ranks last among 22 developed countries for health digital policy and data linkages. With over 800 different systems operating across our public health sector alone, the fragmentation prevents the seamless information flow that could transform cancer care. As Murray puts it, "My local Tesco knows more about me than my local hospital does."
Whether you're concerned about cancer risk factors, curious about screening programmes, or interested in how data shapes healthcare policy, this episode offers invaluable insights into the present and future of cancer control in Ireland. Listen now to understand the remarkable progress we've made and the challenges that still lie ahead.
Thanks for listening! You can watch the full episode on YouTube here. Don’t forget to follow The Laura Dowling Experience podcast on Instagram @lauradowlingexperience for updates and more information. You can also follow our host, Laura Dowling, @fabulouspharmacist for more insights and tips. If you enjoyed this episode, please subscribe and leave a review—it really helps us out! Stay tuned for more great conversations.
We're also a growing population in Ireland, so we're growing and we're aging and the number one risk factor actually for cancer is age. So the older you are, the more likely you are to pick up cancer and why is that?
Speaker 2:The more your cells divide, the more likely they are to make a mistake.
Speaker 1:Yes, the most people that are on the register are over 60.
Speaker 2:We were talking earlier about Spain and Ireland being neck and neck. Was that life expectancy? That was life expectancy, yeah, life expectancy. That was life expectancy, yeah. Which really shocked me. All we hear about in the newspapers is that we're binge drinkers and overeaters, but actually we have the highest life expectancy in.
Speaker 1:Europe. Yeah, there are lots of elements to it, but certainly tobacco control is a big plus for it because you know we have been very vigilant. What about alcohol and cancer? Tobacco, obesity and alcohol in that order are three main risks.
Speaker 2:We do have very high life expectancy. We're keeping people alive for longer but as a result, they may not have like a great quality of life being kept alive. Are we almost going too far in terms of treatment and this high life expectancy Good?
Speaker 1:Lord For young people.
Speaker 2:I would always say Welcome back to the Lower Down Experience podcast, where each week, I bring you insightful and inspiring guests that will open your mind and empower your life. My guest today is Professor Deirdre Murray, director of the National Cancer Registry of Ireland. In this episode we delve into cancer in Ireland, from incidence rates to what the data is really telling us. We talk about cancer screening, what's working, where we need to improve and just how important it is for people to show up for their screenings. We also get into the big picture stuff life expectancy in Ireland, the rising cost of newer, more advanced cancer treatments and the role of health economics in deciding what gets funded and what doesn't. We touch on how artificial intelligence might shape the future of cancer data and how proper joined-up IT systems ones that actually speak with each other could really transform how we collect and use data about cancer in this country. It is a fascinating conversation for anyone living in Ireland who wants to better understand cancer, how it's tracked, how we respond to it and where we are heading.
Speaker 2:Before we get into today's episode, I would love to ask you for a little favour. If you like this podcast and I know so many of you do, you could really help me out by giving it a nice rating, sharing it with your friends and subscribing to the podcast. It may not seem like a big deal, but actually this really helps to keep the podcast high up in the charts, and that means that I can keep bringing you brilliant guests who are insightful, inspiring and full of wisdom that we can all learn from. Thanks a million. Now let's get to it. This episode was produced by podcottseditingcom. Tell them, laura Dowling sent you and they might even do your first podcast free of charge. Can you explain to me what the National Cancer Registry is?
Speaker 1:So the National Cancer Registry is the body that collects data on all cancer in ireland, so all cases of cancer in ireland, and we do this under legislation that was established back since 1994 and we have the authority and indeed the responsibility to collect information on anyone who is diagnosed. So this happens a few ways. We get pathology reports are sent to the registry from the individual hospitals on a sometimes daily, weekly or monthly or depending on how big the pathology laboratory is. We get feeds from radiotherapy, we get feeds from the hospital administration systems and then we actually have staff in the main cancer centres and the bigger cancer hospitals, both public and private, to collect that data. And the reason why we do this really is so that we can establish for the Irish citizen what is the incidence of cancer, so how many new cases of cancer we have every year, what are our cancer deaths like and what's our cancer survival. Because they are the main three metrics of what we call cancer control.
Speaker 1:And we know that infectious diseases in the earlier part of the previous century would have been the biggest killers. We had cardiovascular disease being a major killer, but now, because we're living longer, cancer has is now the number one cause of deaths in Ireland and very few people. There are some people that have genetic predisposition to cancer, that get cancer early, and obviously childhood cancers are a different setting. But most cancers, a large number of cancers, are lifestyle related. So it's due to the lifestyle trends and the decisions we've made throughout our life is why we develop cancer later on. So if we can improve those and if we can reduce those kind of those risk factors, we can help to improve cancer control in Ireland.
Speaker 2:And when you say about collating the data, that's just everyone's data goes in there. They don't really have a say in that, or not, do they?
Speaker 1:Everyone's data goes in there. Yes, we do it under law, and countries are different in the way they do this, but I suppose the way we have it, it means that everybody's individual experience is captured in the registry and everybody's individual experience helps to shape the decisions for the next generation of cancer patients. And often, when I'm talking to either patient groups or family groups, individuals say oh well, to me, I'd love to have had, you know, been involved in a clinical trial because I'd love to have made things better for the next generation. And the way I say to them well, at least your data is going to the registry and it's part of that decision making, because the trends that we report on improving survival or reducing incidents or reducing mortality help to inform decisions for how services are shaped and how they're configured and how treatments are and how they're working.
Speaker 2:Sometimes you'll see news headlines saying more cancer than ever has been diagnosed in young women, or more breast cancer has been diagnosed in young women. Is that because our detection rates are better or because of environmental factors, cancer is more prevalent?
Speaker 1:Well, we have no doubt that we have better diagnostics. Cancer is more prevalent. Well, we have no doubt that we have better diagnostics. You know that diagnostics are improving day by day. But we're also a growing population in Ireland and we're an aging population. Ireland would have been the young population in Europe for many, many decades and when you think of that, you remember. I mean this is kind of my own personal reason why I think that whenever we had an economic problem in downtown, tens of thousands of Irish people would leave and they'd go to states, australia, uk or whatever, and they'd stay away. But from the 1980s we have people not only going but coming back, and then, of course, we now have net immigration. So we're growing and we're aging and the number one risk factor actually for cancer is age. So the older you are, the more likely you are to pick up cancer. And why is that Just?
Speaker 2:it's just the process.
Speaker 1:The more your cells divide, the more likely they are to make a mistake, and make a mistake and, of course, the more exposure you've had to what we call known carcinogens are things that cause cancer, like tobacco, for example. If you're a smoker, Is it the biggest risk factor? It is the biggest risk factor For all types of cancer Well, the vast majority of them anyway. Yeah, Obviously people will know that it's a big risk factor for lung cancer.
Speaker 1:I mean, 70 or 80% of lung cancers are caused by exposure to tobacco smoke, but it's also for kind of upper esophageal cancers and cancers of the head and neck. There are lots of different that there's a whole range of them. It really impacts on nearly every body system, even breast cancer, even though it's not. It's. There's evidence coming on now that it's not a major risk factor of breast cancer, but it is there. It's one of the one of the contributing ones. So if we and a report we're bringing out later on in the month will show that, you know we have 3000 cancers every year what we call tobacco related. So if we actually stopped and that's out of 24,000 overall, so that's a huge percentage really.
Speaker 2:So 24,000 new diagnosis of cancer every year.
Speaker 1:New diagnosis invasive yeah, what we call invasive cancer. So these are the cancers that can spread outside the body, spread outside the organ where they start and can potentially cause illness and can kill you. We also collect information on other tumors, like some benign tumors. For example, we collect information on benign tumors of the brain simply because of the location. They can also be lethal and cause severe illness and morbidity. But we also collect some what we call precursor or in situ cancers. So the situation before it becomes invasive.
Speaker 1:We collect some information on that and we collect some tumors of what we call unknown behavior. So we have 42 000 cases of tumors that we collect information on every year. 11 000 of those will be skin cancers. 24 000 then will be the other types of invasive cancer, and then we have the other mishmash that I was talking about as well. So, and that number we know will grow and, with the best will in the world, is going to grow because of the population aging and and growing, and we would have brought out a report in 2015 saying that the that we're expecting it to at least increase by 50 and potentially double by 2040. So that's just because of the populations.
Speaker 2:So is it over the age of 65 where cancer is diagnosed the most.
Speaker 1:Yes, most people that are on our books or that are on the registry are over 60. That's the biggest population, because it is and all of the cancers that we talk about even talking about skin cancers, which people very often melanoma people often relate to younger people because 22% of people with melanoma are under the age of 50. But melanoma is much more common in the 70 plus age group in terms of numbers. So it's just the way it's. Cancer portrayed in the media. It's often portrayed with younger people.
Speaker 1:In fact, there was a really interesting abstract, was it submitted to on the American conferences and I was always saying I'd love to have been in that, I'd love to have done that research. They looked at hundreds of movies and they classified as how cancer was shown. It was nearly always a blood cancer, it was nearly always a young person, a young woman, and it was nearly always lethal. So that's the way it's portrayed, whereas in actual fact there's been huge advances in cancer treatment and we're now living nearly 65% of us are living at least five years beyond the cancer diagnosis compared to when the registry started, when it was back at 40%. So there's been tremendous improvements.
Speaker 2:And is a lot of it now about living with cancer and managing your cancer, rather than getting rid of it completely or dying from it.
Speaker 1:A substantial proportion are cured. You know there's no doubt about that. But you know a clinical oncologist will rarely tell an individual patient that they are cured.
Speaker 2:I've had an oncologist on and he was very clear it's, they're in remission.
Speaker 1:Yeah, yeah, they're in remission and that's because you never absolutely know there could have been some stray cell. But there are. We all have. I certainly have family members who have had breast cancer 30 years ago and are fine. You know, had colorectal cancer 30 years ago and you know. So they clearly were cured. But there are, equally, there are some cancers. And I suppose, going back to colorectal cancer again, even when I started training, that was a disease. If you had late stage colorectal cancer it was, you were dead. You know you died within two years. Now, with the advances in therapies and treatments, people are living with that much longer. You know they're living many years beyond the two and sometimes up to decades. So the whole treatment for cancer has changed dramatically. It's becoming increasingly personalized, it's becoming increasingly effective and obviously, unfortunately, increasingly expensive. So there's all those combinations.
Speaker 2:Yeah, we see in the media sometimes that say, for instance, there is this brand new cancer treatment, but we're not doing it here in Ireland because of the economics of it and the expense. So do you find that frustrating yourself or is it a who's been in that situation where you have a family member?
Speaker 1:and you do hear people saying I'm going to south america and all these sort of things.
Speaker 1:You know people get get very concerned and very worried about it. So you do want to have, you know you do want to have this treatment as as soon as possible. The reality is, of course, is that you don't know if that treatment's going to actually impact on you because it, like all of these new treatments, don't work for everybody. They work for possibly sometimes a minority of people. For those minority it's life-changing. But you don't know if you're in that group and that's the problem for the pharmaceutical companies they don't know which of the, which sub, it's subgroups of these cancers will treat it.
Speaker 1:So I suppose in ireland we are slow. Partly that's Ireland's economic position. We're a small country. The pharma industry, we're not a big population for them, so for some situations it's that they just don't put in a submission because they're busy negotiating with Germany or one of the other massive countries and then equally it is quite slow. Certainly that is something that I would I often say whenever I'm at any kind of EU thing. Can we not just do a one hits for all? I know we have different economies and we have different economies of scale and obviously Eastern Europe cannot pay what we could pay.
Speaker 1:And you know there's lots of complexities about it, but there is a lot of duplication going on in the different countries.
Speaker 2:I can imagine, you imagine even the paperwork that goes on in Huge. If paperwork is going on in every different country because I know what it takes to get a drug through right. If that could be centralised, should that save time, money, resources in the first instance, in the first instance. Yeah, so the whole health economics playing out there. If they could do a health economics about that and then extrapolate that, that out absolutely.
Speaker 1:I mean that sort of thing is something that makes sense because, to be fair to the, it costs everybody, including the people producing the drugs, to do all of this and to do all the prepare all these, and everybody's got slightly different criteria and everyone's got slightly different formats and all that. So it's very, very difficult and expensive to do it, as well as and in the meantime you've got people waiting for these drugs. It certainly could be improved, but anyway, that's just my own personal opinion on that, and what is the most prevalent cancer in Ireland?
Speaker 1:Well, I suppose the most prevalent ones are the what we call the common cancers that have good outcomes, so breast cancer, prostate cancer, non-melanoma skin. I suppose we don't normally include that in our numbers and I suppose the reason. I suppose I might talk about that because we brought out our skin report recently. In our most recent skin report we would have said that we diagnose 11,000, over 11,000 cancers every year. We actually diagnose way more than that, but we just don't have the wherewithal to count the ball because people can get a skin cancer several times throughout their life. So we collect just the first instance of somebody developing a skin cancer. We collect all of the melanomas but the other types of non-melanoma skin cancer.
Speaker 2:Can you just explain what a melanoma and a non-melanoma is to our listeners please?
Speaker 1:There are lots of ways of categorizing skin cancer. One is melanoma, which is a less common but more we call more dangerous and more invasive type of cancer, and the other one is a non-melanoma skin cancers. They are much more common. So of the 11,000 we're talking about, we've got about 1200 of those are melanomas. So it's the smaller group, but the number of deaths from melanoma are much higher. And equally for the, there's almost 100% people will survive five years with a non-melanoma skin cancer because they're a very slow growing and they don't tend to invade beyond the local areas. Some can the majority and they can in general just be cut out. They're mostly done. Yeah, seen and done. I often have dermatologists and plastic surgeons saying well, we want to know all the numbers because of course it's huge impact for them.
Speaker 1:Never mind the pathology reports, the pathology people working, and there is a concern. They are absolutely cause concerns to families and individuals. When you have it and it means GP appointments, hospital appointments Somebody has to look at the do the pathology report. They are costly, but I suppose in the, in the firmament of cancers, they're what we call indolent or slow growing and they're not lethal and some countries count them and some don't. So to make sure we can compare our data with others. We focus predominantly on the invasive cancers which can be lethal. But we do collect to help to for people planning those services. We do collect, at least the first instance. But that probably underestimates by about 50.
Speaker 2:I mean we probably have up to 20 000 of those every year, you know so then, in terms of other cancers that are prevalent in ireland the breast, the prostate, the colorectal- yes, the commonest cancers in ireland would be breast, lung, colorectal and prostate.
Speaker 1:But lung cancer unfortunately has much poorer outcomes than the other three. So there are people living with those cancers as long as there are with breast and prostate, which have very good outcomes overall.
Speaker 2:Breast cancer research and diagnosis and treatment has taken huge leaps and bounds, hasn't it in the last number, like in in the last I don't know how many years, like 20-30 years? So, for instance, my granny died of breast cancer at the age of 53. And she probably had it for many years before then but just didn't get checked out. And we are doing an awful lot. There's been great leaps and bounds and strides for breast cancer, hasn't there?
Speaker 1:No doubt about it. There's far better awareness, there's far better treatments and of course, there's a screening program. So all of those have helped to improve the outcomes of breast cancer, so that we're picking it up earlier. And of course, the earlier for any cancer that you get, the earlier it's diagnosed, the better, which is what I always say to myself and others. You know, some of us we have these symptoms thinking could it be? Oh, I don't know if I want to go and get that, what if? And you start thinking about that. But an actual fact, the earlier you go to get things checked out, the earlier the stage you are diagnosed, the less treatment you're going to need. You know, I mean we're talking about the skin cancers requiring just an excision in outpatients. Now most of the other cancer will need a bit more than that, but often there are some there are a lot of them that can be treated by surgery alone if it's an early enough stage and you don't have to go down the chemotherapy or radiation therapy element of things. So the earlier the better is sort of the mantra for any cancer diagnosis.
Speaker 1:And yes, there's been huge leaps and bounds in that. Huge leaps and bounds in treatment. I mean the drugs have made a huge difference. You know, Tamoxifen was a game changer and I'm sure there's a next suite of drugs coming on to improve further again. So there are a lot of people living well and beyond and getting perhaps a second primary or you know whatever, and having that managed. And even for those who have metastatic disease, there are again a disease that would have been a very short life expectancy People are living on with that A metastatic disease just for anyone listening is where it is invasive and it's spreading.
Speaker 1:And it's spread yeah.
Speaker 2:Is there an argument for the screening process for mammograms to be done in younger women? I know that there's in America in some states or something they're doing them younger, like from 40 plus they're recommending them Is there arguments for that?
Speaker 1:There are definitely arguments for it and I suppose that is something that we that it's a kind of question that has come into the comes into the screening committee. There are arguments for and against. All screening programs have benefits and limitations and all screening programs may misdiagnose and may actually over-diagnose. And particularly in breast cancer you can over-diagnose because you will diagnose all of these very small, what we call in situ cancers. That are very small tumors that you'd never know. You had yourself and a proportion of those, but we don't know how many or which types would never spread. But they're obviously treated because once you have one you have to treat it. So there's that element. It's rarer in younger people and younger women have a different breast density, so it's more difficult to pick it up because of the.
Speaker 1:As in the breasts, are thicker. They're more dense, yeah, more dense, yeah. So they're kind of. If you look at the mammogram, it's a much whiter overall, and I mean they're looking for these white elements, for spots. Now, again, there are advances. The new AI is coming on with radiology and radiology reading that this might help to improve that.
Speaker 1:But you do want to make sure that you're not. If you're applying any of these tests to a population, you want to make sure that you're not sending too many people for tests that they don't need or treating people that they don't need and, equally, or that you're missing cancers that you should have picked up. You have to be able to balance that. It's a good test for that and that is based actually on the epidemiology or the level of those cancers in the population. So that's kind of one, particularly for screening. You have to look at it in your own population. You can't really extrapolate from other countries where they maybe have people at a higher risk of breast cancer for one reason or another because of a different kind of demographics.
Speaker 2:And then in terms of the data that you collect, let's say, for instance, like occupational hazards or things like that, do you collect like lifestyle factors when it comes to?
Speaker 1:cancer. You know, I suppose when the regencies began first I began to try and collect some of those. But we can only collect what's in the hospital record and we can only collect it if it's collected in the hospital record in a very consistent way. So we don't collect anything in lifestyle, which is pity because it would be lovely if it was, and we don't collect an occupation, which is even a bigger pity, because I suppose I was talking about 40% of cancers being preventable. We know another percentage are genetic, but another percentage is unknown.
Speaker 1:We actually don't know what the reason is for and I'd say, other countries such as Finland. They have actual occupation databases where, because it's not, if you remember, most of our patients and most people on our registry are 60 plus, so on their record it might be down, retired. It's not their current occupation, it's their whole history that you need to look at, because they may well have been working in a factory that had carcinogenic materials and poor health and safety measures. We now know how much health and safety has improved in the last couple of decades In Finland. They can match their own records with their occupational health records, occupational records and do studies like that. Unfortunately, we can't. We're down to. We can't do anything on occupation, so it's more observing what's there and looking at associations rather than really being able to look at proof.
Speaker 2:And are there any correlations between living in a certain area in Ireland, so say East Coast versus West Coast, and the prevalence of different types of cancers? And would there be like people looking into why that might be? Or is that just? Do you need AI for all?
Speaker 1:that. No, we do collect it at a small area level, so we collect it at an electoral division level, and we do have maps on our website. We do have a new website that we just launched there last month. What's it called?
Speaker 2:NCRIie.
Speaker 1:Okay, so we have maps a new website that we just launched there last month. What's it called? Ncriie? Okay, so we have maps on the website which are kind of old now because they're running up to 2017, but we're bringing out new ones in the next number of months and you can see some very so. For example, melanoma. There's a south southeast Because of the sunny southeast yeah, you can see it very, very clearly there and there are some and, equally Because of the sunny side, psa testing the PSA testing that was being done. There's basically an opportunistic screening program running in Ireland where people, if they go for their test, they'll get a PSA test quite often at the same time. So we're detecting way more, whereas that's not done in other countries and certainly not done in the North.
Speaker 2:Okay, and actually I wanted to ask you where does Ireland stand and fare in terms of outcomes for cancer and health in general?
Speaker 1:outcomes for cancer and health in general. So our outcomes are improving. I mean we are the one of the fastest we have. It's difficult to compare across European countries because, as I said before, there's a huge difference between the registries. So, for example, very few countries have full population registries. France and Spain will only have coverage of about 20 or 30% of their country and then they have to kind of extrapolate for the whole population from that 20 or 30%. Italy has lots of small registries and they're hoping to get a national registry together. Portugal none of those have national registries like ourselves.
Speaker 1:England, scotland, wales, northern Ireland, belgium, denmark, the Netherlands, those Norwegian countries, the Northern we all have what we call full population. So that's the first thing. Then other people have consent-based, so that immediately reduces down the number of cancers you can collect, because some people will, you know. So there's difficulty in measuring incidence. And then there's also differences in how people even measure deaths. Surprisingly, you know, amazingly enough perhaps, how you classify them. But what is robust is how trends change or how the rates change within time, and Irish mortality rates are falling faster than anyone else in Europe in the last decade. That would say we're doing it and that's looking at all of Europe, including Eastern Europe. But if any of you look at what we call our economic peers, it's equally the same. We're falling very fast. So we're definitely doing something right to get that.
Speaker 1:Now I'm not saying could we be doing better, absolutely we could be doing better, you know. So, for example, we would have we're talking about breast cancer. We have kind of five-year survival of 85, 86%. They have maybe 90% in Norway and Sweden. So what is different there? How to get that 5% extra and that is difficult. Maybe it's the people that were coming to screening. Maybe the Nordics get more people attending their screening programs. And then it's also having a real focus on how the cancer is managed from the moment the person is diagnosed until they've finished their primary treatment, which is what I suppose the cancer centers were established for.
Speaker 2:In terms of people turning up for their screening. What are the rates in Ireland? Roughly they are good.
Speaker 1:You know they are good. They're certainly above 70% and that's what the you have to be above 70% to be an effective programme. They're above that, but we would know, for example, that people living in poverty and people living in poor areas are less likely to attend a screening.
Speaker 2:And is that because of a lack of awareness that there is screening, or is it?
Speaker 1:do you know? All sorts of complex factors I suppose you know. You can imagine if you're busy trying to figure out how you're going to pay the bills this week, next week you get this. There's all sorts of problems happening in the issue. Poverty is a huge stress on any family and it's a known cause of ill health and has been for decades.
Speaker 1:Even the stress of poverty can lead to stress alone, nevermind not being able to buy proper food or buy a good range of food or be able to all of the issues that come with poverty. And I don't know anything about them because I've never lived in a poor, I've been lucky enough not to be born into a poor area. But from what you observe from patients coming through, they have so many other family issues that they have to deal with and issues that they're dealing with that it's hard for them to prioritize their own health.
Speaker 2:No, of course, and it's so difficult to see that.
Speaker 1:It's just it is. It is difficult to see that and I know that screening program do a lot of outreach to areas where they know that the uptake is poor or is less than optimal. They do a lot of outreach and they do work with different ethnicities. I mean obviously our own Traveller community and other ethnicities coming in now because we're now a multicultural Ireland. All of that adds to the complexity. It's work for them every day to try and get people to come to the screening programme.
Speaker 2:And the screening programmes that we do have in place in ireland. What are they? So we know we have the mammogram, the breast, we have breast cancer screening.
Speaker 1:We have a breast cancer screening, we have cervical cancer screening and we have now colorectal cancer screening. For first two, obviously for women only, and the colorectal is for males, men and women and is it over the age of 65, the colorectal screening Colorectal is 60 to 69, and it's going downwards everywhere.
Speaker 1:So what it is right now it could be 58 to 69 or 58,. You know that kind of age group. The original plan was for 55 to 74. That's what the original health technology assessment said. That was the most optimal one. So that is what they're working towards and they're all I know the screening program are also looking at maybe at younger age groups as well because of the prevalence of colorectal cancer or the increasing incidence of colorectal cancer in younger people.
Speaker 1:But I suppose the cervical cancer screening and colorectal cancer screening have a double win because they actually reduce the incidence of cancer. They don't just detect early. The breast cancer detects early but it doesn't reduce the incidence. Breast colorectal they pick up these early precursor tumors or lesions that can be removed and then that drops the incidence. So we've seen since cervical cancer program started we're seeing a fall in the incidence of cervical cancer every year since it went nationwide in 2008. And we're beginning to see that drop because it's a bit later for colorectal cancer. And colorectal cancer they're looking for a 60% uptake and they haven't achieved that yet. You know there still is, people aren't. I suppose people aren't familiar enough with it. You know you have to measure your own stool sample and all this sort of stuff which is it is.
Speaker 2:That's what it is. It's a stool sample sent back into the lab.
Speaker 1:Yeah, they send. You get what's called a fit test comes out in the post and you have to measure your own stool sample and put it back in and send it back. It's difficult to get people. It does take we've seen from other countries it can take, you know, years, sometimes decades, to get people familiar and comfortable with that sort of element of things, even talking about things. But it is so important because it makes such a huge difference.
Speaker 1:It makes such a huge difference if you're picked up early, as it is it can. Also, it reduces even the incidence of cancer. So if you get you might have a polyp that's a little bit angry, we'll call it. You know that is going in five years to go on to become cancer. You're picked up on your screening program taken, that's it. It's, you know, done as an outpatient, never have to go through anything that the cancer arise.
Speaker 2:So it really is important to take those opportunities when they arise and, of course, with the HPV vaccine rollout as well. We're seeing less and less instance, then, of the head, neck, throat, penile anal cancers as well. That the HPV virus can lead to cancers off, isn't that right.
Speaker 1:Absolutely. And I mean, as an epidemiologist, we're used to things running along in a certain way nice and predictable and whatever. So it's really exciting to see an actual preventable cancer vaccine. It's unbelievable actually, isn't it? It's phenomenal and the change, like the whole epidemiology, is changing dramatically. And we haven't even seen the impact of it yet, because the girls who would have been vaccinated at 13 are only now coming into their 20s and, of course, we have it for boys now as well, since 2019. We started it for boys as well.
Speaker 1:I won't be around in the registry because it's going to be another 20 or 30 years before we see that impact, but it is. It's going to be. It's life changing, you know, just to see a disease devastated like that. And I mean we do have a very active cervical cancer elimination program, which the registry and the screening program have worked with researchers in Australia and come up with a date 2040. It's going to be eliminated. By that means it'll be made a rare disease, because you can never totally From infectious disease. I always think elimination is eradication, but it's not for cancer. It's kind of you make it a rare disease and that will be because of vaccination predominantly, but also the screening and treatments, that they play their part and certainly watching from the sidelines in 2040,.
Speaker 2:I hope to be anyway, and if you look at the data from the countries that adopted that vaccine early, the signs are just wonderful for the reduction in all of those cancers.
Speaker 1:Yeah, well, I mean the screening program brought out a paper last year already showing the precursor lesions have plummeted. So the ones that we wouldn't collect those. So there are three different types of precursors as ones CIN1, 2 and 3. We only collect 2 and 3 because they're likely to progress to cancer. Cin1 is even you know, it's a bit like the skin cancer. It's too low a risk for us to collect it. But they're seeing plummeting of those precursors which are the ones you need to have before you go on to it. So it's already beginning to show in the screening program and in the next, certainly in the next decade, we'll begin to see it in Ireland and it'll be just fantastic to see that.
Speaker 1:And it's really again like vaccination is something that you just have to keep doing all the time, in a way when you kind of eradicate the disease and I think of things like polio and whooping cough and things like that. You almost forget what it's like. And I spent part of my medical career as a medical student. I was working, went to Africa for a summer and that told me quite clearly how important vaccination is, because there were children there dying of whooping cough, of measles, of diphtheria, that all sorts of diseases that we'd never see here, and once you stop vaccinating, all these come back. They don't just they're not gone for good. That doesn't happen. And the same for vaccine preventable. Unfortunately, the preventative message is kind of boring, it's dull and it has to be consistent. It's the same thing every day, but that's what you have to do, the same thing every day to achieve the outcomes that we're looking for.
Speaker 2:I even have friends in the GOM clinics you know the Janitorial Urinary Medicine clinics and they're saying the instance even of genital warts in, say, your young 20-somethings. They rarely see it nowadays because the HPV vaccine has just eradicated it Absolutely yeah, so it has such a knock-on effect. You did mention about colorectal cancers, the instance of them increasing in younger populations. Do you know why?
Speaker 1:Well, I mean, the short answer is no. We don't know why. I mean assuming it's something to do with diet, but there are possibly a lot of other factors that could also be due to changes in the gut microbiomes. There's lots of things speculated as to why we're getting this earlier. It's something we've looked at now and we don't see a huge range in colon cancer. We've seen a slight increase in rectal cancers, but that is going to be another 20 years, I suppose, before we fully understand that, because there are lots of contributing factors to colon cancer. Okay, AI.
Speaker 2:How is that going to affect your work?
Speaker 1:I'm hoping it'll be very helpful because there is never and this is what I always say to the staff, there's never going to be a reduced requirement for cancer data. It's always on the up because, first of all, we're going to have more cases, as I've said before, with the aging, but also because of people living much longer. At the moment, we only collect treatment for the first 12 months after diagnosis and we know people are living far longer than that and getting treatments beyond that, and some of those other treatments of the later treatments are in fact even the most expensive, particularly the treatments for so we don't systematically collect information on, let's say, recurrences of cancer or late spread of cancer.
Speaker 2:I'm sorry. Why is that? Is it just? It's just hard to get that data fed back into the system.
Speaker 1:I suppose we would have anything. We'd have the recurrences for anything that had a biopsy taken. We'd have that number. But you know, some people would may well have it might have been an imaging. So you had a CT scan and that showed a recurrence and possibly the clinical decision in conjunction with the family, was it's gone. So far we can't do anything further with this. So we're not going for treatment and plus we're staffed to collect the 42,000. That would be another, maybe another 30% increase in staff.
Speaker 2:Do you only collect data on the cancers that go in and the people that get treatment for the cancers, rather than the cancers that the image is done and they're decided not to treat?
Speaker 1:No, we collect everything on everyone for their primary treatment.
Speaker 2:Okay, okay, I'm talking about recurrences.
Speaker 1:Now, if somebody comes back and we collect everything on the primary cancer. But if, let's say, three years down after your treatment, you come back in and your image shows, you know that you've got a substantial spread and people say that there's no treatment or they're giving limited treatment. For that, we just don't have the resources to be able to follow that person up and find that person and collect their treatment. Now we're keen to do that and I would hope that AI will help us with that. Of course, for AI to help us with that, we have to have electronic health records in the hospitals in the first place, which we don't have either. I'm hoping this. All of the noises are that we are going to move to leap forward in technology. You know, because we're a very tech literate country, but I mean, the report in 2023 listed Ireland as 22 out of 22 developed countries for our health, digital policy and our data linkages. In other words, we haven't had a coherent national strategy that has been implemented and all hospitals and all health institutions have done what they've had to do. They've had to develop their own, you know. So they develop their own systems. People haven't people. Tech costs money, as we all know. It costs a lot of money and people haven't had the wherewithal to put in, or very few. Some have put in electronic health records, most haven't, so they would have their own theatre system. They've got their radiation system. They've got their oncology system. They've got their demographic systems, and those systems are all different. They've got a laboratory system. Now all the differences are different, they don't speak to each other and we do now have a national imaging system in the public sector which is covering most of the hospitals, and we are expecting a rollout of a laboratory system. The imaging system has already been game-changing for us, even just to be able to see the images in all the hospitals everywhere we go or see the reports. We don't need to see the images and the pathology will be the same.
Speaker 1:When you listen to other european countries and they're talking about I mean, in germany they were talking about well, you know we have to deal with 30 different systems. Um, you know, in ireland we're dealing with, in the public sector alone, over 800 different systems. Yeah, and that's not to mention the private hospitals, which are big providers. In Ireland, between 20 and 30% of cancer patients are only seen in the private side and they have different systems again. So it's a big body of work there, but look, I am confident that people are looking at it now and, as I always say, my local Tesco knows more about me than my local hospital does, and I don't even shop regularly in Tesco.
Speaker 2:I always shop with value, just yeah but you know that's a bit of a resistance GDPR wise in Ireland as well for all of this technical there's a bit of that, but I think there's also been just a lot of nervousness.
Speaker 1:I don't know if you remember there was this. Hr system that was being brought out across the health service 20 some plus years ago. I don't know the ins and outs of it, but the cost of it began to grow and everybody got very worried about it and then eventually it was cut off at midpoint and that has that seemed to. There's never. That was the only system that has been national, until the national imaging system, covid, has been very helpful because it came along and showed us how poor our information systems were you know, and, of course, in fairness we were able to go straight on to electronic prescribing when people were saying it couldn't be done.
Speaker 1:Exactly.
Speaker 2:You know, overnight, overnight miracles happened.
Speaker 1:Yeah, we built a vaccine database. That was terrific. Yeah, electronic prescribing suddenly happened. My concern is that that momentum is that was there has gone back a little bit again. But we absolutely have to do it for patient safety alone and that's the first thing. But then we have a whole load of duplication of tests going on if you go from one hospital to another because you can't access the previous records and all of this sort of stuff. People are going through having another CT scan, having another set of labs or whatever. We've got inefficiencies. We certainly need to move it on, never mind the registry. Who's there waiting for the electronic health record that we can apply our AI bot when we get one to take the data in Hospitals are countries that have electronic health records.
Speaker 1:They haven't yet moved. Ai hasn't moved on to do that yet, but I've no doubt in the next five or 10 years it will do it. The next five or ten years it will do it and that will help because we're certainly have the full data to be able to monitor and report on cancer control in Ireland and you know which is the new cases, the deaths and survival, but the rest of the kind of cancer patient experience, and I'm talking about all the other treatments and complications and side effects that happen. There's so much data that could be collected on that and I remind you all the other treatments and complications and side effects that happen. There's so much data that could be collected on that and I remind you all the genetic elements, elements that are going to be changing the world as well. There's so much information out there that could be collected, collated and again reported and disseminated to help the next generation. I'm looking forward to that coming along.
Speaker 2:Can I ask you why there isn't a national screening for the PSA? The?
Speaker 1:evidence for prostate cancer screening has been ambivalent. There were two big randomized control trials that were reported around the same week. There might even be a report in the same journal, one showing an improvement in mortality and another showing no difference or you know whatever. So the difficulty is and I always say when I talk about prostate cancer it's like talking about the difference between tiger and between kitten and tiger tumors. So a large number of prostate cancer 80% of 80 plus year olds that die and have post-mortem for whatever reason, will have some element of prostate cancer in them because it's just a natural part of aging. But obviously a proportion of those can become aggressive and can kill. But the difficulty is finding a test that is sensitive and specific enough to pick out that cohort and the PSA test. It doesn't quite seem to be that now there is a pilot running at the moment in. It says European review of it. There's been a European look at cancer screening in total and they're making recommendations that each member state needs to look at lung cancer screening, gastric or stomach cancer screening and prostate cancer screening. So we actually have pilots on all those three now running in Ireland Because, as I said before, you actually have to do it on the local population to see how effective it is there. So that will give us some answers.
Speaker 1:You know, at the end of that, and the problem with screening randomized controlled trials is that they're very expensive and they take a long time to report. And by the time all that happens, the demographics have changed. Again, you know and you've got you know. So, for example, you couldn't do a randomized control trial the last one for breast cancer would have been back in the 1990s, I'd say and then people just are carrying on with it, carrying on now. So it takes a long time to get to that level.
Speaker 1:So, yeah, we'll have to see what the pilots come out with, but there hasn't, it hasn't been, it hasn't been as clear-cut. There's much more evidence for lung cancer screening in a bespoke population, but again, it's all dependent on getting that population to turn up. So this is for lung cancer, it's people who have a history of smoking, heavy smoking, in a certain age group and you have to get that group to turn up. And you have to get that group to turn up to a big enough percentage to make it worthwhile from both the health benefits of it, that group to turn up and you have to get that group to turn up to a big enough percentage to make it worthwhile, from both the health benefits of it in other words, that you're not over diagnosing and under diagnosing people and also from the cost, because it's very expensive they are expensive programs and then to be cost effective. I'd hate to be the Minister for Health or anyone involved in side, because everybody has got their own story.
Speaker 1:But at least with prevention because I think with prevention elements and screening is one of those you're mostly reaching out to people who think they are well, they're feeling fine, there's nothing wrong with them as far as they're concerned you have to make sure I think there's a different kind of, there's a different duty of care to that population. You have to make sure that what you're doing is in the main going to be beneficial to them and in the main is also beneficial to the public purse. So it's helping public purse because it's different to somebody turning up with a symptom and saying that that's a different relationship. So you have to be absolutely scrupulous when it comes to big population screening programs, that you're doing the right thing for the Irish population, not just importing things from other countries. Okay.
Speaker 2:And we were talking earlier about Spain and Ireland being neck and neck Ireland was for. Was that life expectancy? That was life expectancy, yeah. Which really shocked me because, you know, all we hear about in the newspapers is that we're binge drinkers and overeaters, but actually we have the highest life expectancy in Europe, yeah, and a lot of that, I think.
Speaker 1:Well, who knows?
Speaker 1:There are lots of elements to it, but certainly tobacco control is a big, big plus for it, because you know we have been very vigilant and very we've been as aggressive as we can.
Speaker 1:Well, you can always be more aggressive when it comes to tobacco control, but anyway, what we have been, we have taken a lot of first countries in terms of the smoking ban and we have the taxation elements that the smoking is involved. We've got the packaging and the banning under 18s and all that sort of stuff and, a bit like any of the prevention of policies, it's again something that you have to keep the pedal on and you have to keep the eye open. And even though we do have and I have no doubt that the improvements in tobacco has led to increase in life expectancy, because your cardiovascular risk drops straight away, you know, if you stop smoking, it literally drops straight away and others, as time goes on, begin to reduce as well. So we do have to keep an eye out for things for, let's say, the peripheral threats that are occurring up, such as vaping, which is obviously another way of getting nicotine.
Speaker 2:Do we have any data on vaping though, because it is relatively new and you kind of need these long-term studies or observational studies to see. But you do hear from the newspapers say oh you know, young girl of 16 has chronic lung disease as a result of vaping. But what are you seeing on the ground?
Speaker 1:Absolutely, you're right, it does take. I mean, the classic Doll and Hill study of 1950 was the first descriptor of how lung cancer was caused by smoking and the first description of the association between lung cancer and tobacco, and we haven't had vaping long enough. However, there have been studies done in Ireland and internationally that show that vaping is a gateway to smoking for non-smokers.
Speaker 2:So young people? That's interesting. You see loads of young people vaping.
Speaker 1:Mm-hmm, yeah, and that's a way for them to go on to the cigarettes.
Speaker 1:That is the way that you're many times more likely to start smoking if you vape than if you're a non-vaper. So I suppose that's what I mean. These kind of they're almost seem to be peripheral threats to say, oh, it's not tobacco, it's something else, but in actual fact it's still nicotine and it will lead. It does need to be regulated, and more regulated than what it is, because it does lead on. We know now that it leads to. We don't know the long-term cancer effects and that'll probably take another 20 or 30 years to actually fully elucidate that, because they're so recent and of course there are myriads of variations of them as well and what the ingredients are. All you know.
Speaker 1:That's it's like for a smoking. We're more or less a tobacco. Cigarettes are pretty well similar, it's just it was a branding issue. More than anything else is different with vaping. Vaping it takes a long time exposure to the risk factor. It can be 20, 30, 40 years before you'd see the response in the lung cancer statistics or other cancer statistics. But I think we probably are gathering enough evidence to show we need to be acting on it now rather than waiting for that to come down the line.
Speaker 2:What about alcohol and cancer?
Speaker 1:Yes, alcohol is also one of our risk factors. Now Is it a major risk factor. It would be tobacco, alcohol and obesity, or probably tobacco, obesity and alcohol, in that order, you know, are our three main risks, and I should say overweight and obesity, because it's not just obesity, yeah, and alcohol is. I mean, obviously liver disease is the one that people are. Liver disease and liver cancer is is the one that is most associated with, but it is also associated with the upper esophageal, head and neck cancers.
Speaker 1:Those breast cancer and breast cancer is a big risk factor for restaurants. It is. Yeah, irk, the international agency for Research on Cancer, came out with a report a couple of years back saying there was no, there was no safe level of alcohol, and I'm speaking for myself. I certainly didn't want to hear that message, and I don't think anybody in Ireland. There's a percentage of people in Ireland or not don't drink at all. They're pioneers, whatever but the vast majority, everybody else, didn't want to hear it. We're all thinking about oh, that red wine, and I know and that study or whatever.
Speaker 1:No, I think that has now been debunked. There isn't any safe level, but the real I suppose the reality is is that we take that risk for the pleasures or the benefits that it gives us in other ways, with awareness, and I suppose if you have a very high, let's say you're genetically predisposed to breast cancer, it might be something you need to take into consideration. You know.
Speaker 2:Okay, I like your answer there, because sometimes it's like that, yeah, you're weighing up benefit and risk, but it's also the pleasure that something can give you if you're not over indulgent all the time yeah, yeah you have to live as well you have to exactly.
Speaker 1:I always feel a little bit sorry for the international, because they bring out the next thing that's causing cancer and the next thing, and then we read them all together. You're thinking I can't. I know I can't eat anything, I can't read anything, I can't look at anything, I can't drink anything. It has to be kind of an informed decision. But that's what they're, that's what they're just informing us of the risks and it's up to ourselves to to decide. You know.
Speaker 1:I think, see, many candles can cause cancer. But you know, okay, okay, I'm saying you're cancelling Christmas if you take away all the candles.
Speaker 2:No, of course yeah, what got you into all this Deirdre? Because you obviously, as a med student, you probably didn't see yourself ending up here?
Speaker 1:No, I didn't. No, no, as a medical student I was most interested probably in geriatrics, because there were a couple of really gregarious and excellent geriatricians working in Cork University Hospital and so if I was thinking of anything, that was the area I was thinking about. And I actually went in my junior hospital years I was working in the UK, working in England and in Wales, and in the university hospital. Cardiff was, let's say, the grandfather of geriatric medicine. He would have written the original tome, professor Pathy, and they had a great setup there where they had a multi-disciplinary team meeting. This is way in advance of anything like this being in Ireland. They had community services.
Speaker 1:I still remember walking on the ward and somebody saying to me oh, it's desperate, we've just got major cutbacks, we're down to seven community OTs. And my response was what's a community OT? I never heard of it. Okay, but they also went out to. So they had a team that went out with the patients, went to assess their home when they were gone home, made sure all the changes were done and visit them after and then came back and reported to us. So I was thinking, all right, people actually live outside a hospital. You know medical students you kind of think of people only when they're in the hospital. And then, equally, I saw people coming in like older people, coming in with kind of a minor an infection that they just needed an IV for, but coming into hospital they ended up getting maybe another infection or maybe having a fall or generally things being complicated or getting you know too many medications or whatever, ending up getting confused because they were out of their own and I remember thinking, god, it would be better if they could just manage these at home. So I suppose that's when the key for prevention came into my head and the what would be then called community medicine. So I began to read some of the textbooks around that and was very taken by the philosophy. So I went on to train in public health medicine and then came back to Ireland and came back trained, did my hair specialist training in Ireland and I took up a job in the Department of Public Health in Cork.
Speaker 1:And then around 2006, late noughties, they were setting up the cancer control program and I was asked would I give the public advice to it? So I was myself and there was Professor Tom Keane. You may have remembered he was the guy that came from Canada to save the world back in those days and it was a very controversial time of centralizing services into one hospital in one area and areas felt left out and people left, you know whatever. But anyway it has worked and has worked fine. So I suppose this is why it is very satisfactory to me, and I'm sure it is to Tom he was, he's still looking at these things to see the mortality rate falling so dramatically from I'm sure that's treatment and diagnostics, but it is also the reconfiguration and the centralization of special services.
Speaker 1:So people were getting the same standard of care once they go to a cancer center than they were anywhere, as opposed to prior to that. It was a little bit of well, you know you go to hospital X now if you've got this cancer and you have to be in the know to know these sort of things, whereas that has been taken away and even the GPs to refer had to be in the know and you know All of that.
Speaker 1:Yeah, yeah, yeah who to go, all of that. So you know, at least that is much more organised now. It still needs to be improved there. You know it's not finished. It's an ongoing project because numbers keep changing as the demographics change or whatever, yeah, and then in 2021, um, the job came up with the cancer registry.
Speaker 1:So I decided I'd take that up because I uh, I love data and I was very interested in cancer. I'd spend a bit of time before that back in the covert trenches, as I call it, where everyone was called back for the mothership yeah, back. Everybody had to put the shoulder of the wheel for 2020. For those 18 months. I was missing cancer actually in that time, even though we knew COVID was the biggest threat. We needed to manage that. But I did miss the variety that's associated with cancer epidemiology and the very fast changing and the huge passion that people have from the people working with cancer patients the nurses, doctors, pharmacists. A huge interest in managing to the people who with cancer patients, whether they're the nurses, doctors, pharmacists. A huge interest in managing to the people who are working at a population level, like the people in the cancer control program and the registry, and are there a lot of statisticians in your organization or is it mainly medics?
Speaker 1:There are no medics. I am the only medic, but we have a lot of. There are no medical doctors. I should say we have a lot of nurses. We have a lot. There are no medical doctors. I should say we have a lot of nurses. We have a lot of nurses, who are most of the people that collect the data, have a nursing background. But we also have broadened it recently because we have med lab scientists and we have occupational therapists and we have, you know, we've got a variety of people now who have been proven to be fantastic in coming to it. We had only two statisticians.
Speaker 1:I'm delighted the Department of Health have, in their wisdom, listened to my pleas and we're now building up a research and analysis department headed by Dr Theresa McDaniels, who's nicked from the University of Bristol, so she's heading up that element of things. So that will help A helps with our reports, but also to engage with researchers all over Ireland, because I suppose we're kind of the only repository of cancer epi data. So all the universities would have have a need for that and indeed the hospitals have a need for that. So so we have we've got a number of new recruits in now, which is great which are building that capacity. While I was there, we brought on a communications manager, a new communications officer, who has transformed our reports, because they were very dense technical documents and with her skill, probably only you could read them, Deirdre.
Speaker 2:Everyone else would be glazing over.
Speaker 1:Well, other public health people could read them as well, and they were able to read them by the people doing the health policy, but certainly for the rest of us, mere mortals, it was difficult, and certainly in terms of getting the messages, getting messages out making the information accessible to the vast majority of people.
Speaker 1:Yeah, it is, and even though I suppose our reports are mostly, they are really aimed at people planning and delivering both policy and services. I mean, you do have to consider, like we all, the families out there as well too, and the cancer patients whose data make up the reports you know. So it is really important that they see this. Their data has been part of the reports that come out for whatever tumor site that is being profiled at a particular time. We are very grateful to the Irish setup that enables that, because you see second highest incidence in Europe and all this other stuff, which I actually don't really believe that because our risk factor profile is not second highest in Europe.
Speaker 1:You know we have very good tobacco control. We're reasonable actually in alcohol, even though we, you know, we hear all the time that we're alcoholic. We're actually mid range in terms of exposure to and then, and equally where our overweight and obesity is also mid range, we're not the highest level of that. But because we have this capture, we have this ability to capture all the cancers and we have support and help of the hospitals to collect the data. We are forensic in collecting every single case. So other countries like France and Spain they only have coverage about 20-30% of their population and then they're extrapolating to what the national numbers are and you know the population in the west of France is probably totally different from the population in the east of France.
Speaker 2:So then, if we're collecting all of it, it's a bit like they say now that STIs are on the increase, but actually there's more testing as well.
Speaker 1:And more awareness and people are coming forward, all of those. You have to consider those sort of elements. If you look at the so-called high incidence, it's all the population-based cancer registries. So it's all those that have the same approach as ourselves. The Belgians, the Danes, the Dutch, we all top the incidence level because we're collecting all of the data and other people are still. They just have to do some guesstimates because they don't have the wherewithal to do it and, in fairness, you know it is very difficult. I mean, I think the States is probably the only big cost and they don't have full population either. You know, if you talk about 60 or 70 million, well, I suppose the UK, the UK do collect it for all their population. They have that population too.
Speaker 1:So you're doing your job, right anyway, then we're collecting it to the best of our abilities. Yeah, very, very good we are, and it's important for the reasons I said before.
Speaker 1:Everybody's experience is reflected and it means that we can give very accurate information both back to the hospitals, because hospitals also like to see how many new cases they're going to be seeing this year, how many they've seen previous years, so they can kind of see what's expected. I mean, it obviously doesn't reflect their activity because they see patients loads of times in the year and they'll see patients from five years ago and four years ago and three years, you know they'll be seeing people coming back for checkups or for recurrences, so that all wouldn't be. It's not reflecting their activity but it gives them a ballpark of where there are and what type of cancers they're seeing and what ones they're looking at. So we do give information back to the hospitals, to the main cancer centres and the big private sectors for that on a regular basis. We hand that back as well too, and at least that's accurate. It's reliable data, which is important.
Speaker 2:Of course. Can I ask you this is more of a philosophical question. I suppose we do have a very high life expectancy. We're keeping people alive for longer, but as a result of having these amazing drugs and keeping them alive for longer, they may not have like a great quality of life being kept alive. Are we almost going too far in terms of treatment and this high life expectancy?
Speaker 1:Yeah, and that's always a very difficult question to answer, laura, because the reality is is that from the outside in, you can often say and I mean sometimes I do it when I see the cost of cancer drugs saying, oh my God, you know, we've paid that much and they've just expanded by how many months or years or whatever, but and they've got all these terrible side effects from what was? Is it worth it for them? But the reality is that you could really only make that from your own experience, like the individual. What's a quality of life?
Speaker 1:One person's quality of life definition can be totally different to the others and we know from studies, for example, that things that you think hypothetically they've done some of these health economics what if you were paralyzed and left on a ventilator? Would you or would you not want to have these things happen to you? And the decisions people made in advance of this happening and after it are totally different. Because for people that are sick and living, what others will think are very limited life, or what you know you and I might think, oh, that's a very limited life, very small things, can make big differences to them. You know what they may be thinking is a high quality of life we doesn't look like to us, so I don't think it makes a determination from the outside and equally for the family's perspective. Small increments and small improvements can make huge differences to how people manage their disease.
Speaker 2:So Deirdre, what advice would you give young people today?
Speaker 1:Good Lord. For young people I would always say remain curious and keep your mind open as much as possible. I am so delighted I didn't grow up in the social media era because I think I'd have been down every rabbit hole that's out there, you know, and following every trend that's there and getting totally confused. So I do think it's important to try and detach yourself. I do try to have a one kind of phone free day a week. Don't manage it very often, but I think something like that just giving yourself time off, even carve out a couple of hours in the day when you're just having nothing you know you're doing something for yourself. That's really important because I do think it's very easy to get sucked into all sorts of trends and this feeling of being watched 24 hours.
Speaker 2:Yeah, I think Bob Geldof had it right. They're always looking at you, he's right. And what is the meaning of life?
Speaker 1:Well, for me, I think the meaning of life is that you try and live your life in a way that the world around you is slightly bit better when you leave it, and that's what we're sent here to do. Try and do that. Try and improve things a little bit for yourself, your family, for your neighbour, if possible, for your community and your country. Even better if you can do that. That's what I think we're here for.
Speaker 2:Georgia. It has been an absolute pleasure speaking with you. Thank you so very much for your time. Thank you very much, laura. Thank you.