Dr. Susanna Sullivan argues that our culture of overdiagnosis is leaving many people more anxious, more medicalized, and sometimes less healthy. In her new book, The Age of Diagnosis, she explains how screening tests, shifting definitions of normal, and the rise of mental health labels can turn ordinary struggles and idiosyncrasies into problems in need of treatment.
00:02:35.640We have blood tests that weren't available decades ago.
00:02:39.300The consequence of those tests is that we can pick up diseases and abnormalities at earlier and earlier stages.
00:02:46.520And when we do that, we usually treat everything that we find.
00:02:49.720But not everything that we find was inevitably going to cause a medical problem in the long run.
00:02:54.720So not everything we find actually needs to be treated.
00:02:57.220So that's kind of overdiagnosis by overdetection, treating things that are there but did not necessarily need to be treated
00:03:04.820and wouldn't have caused health problems if left alone.
00:03:08.140And the second way that we get overdiagnosis is through overmedicalization.
00:03:13.040So that's where you begin applying medical labels to things that may really just be ordinary types of suffering.
00:03:21.820So that may be giving mental health labels, for example, to people who are genuinely suffering.
00:03:27.220But it may be that that suffering is better addressed through examinations of life, such as, you know, changing your work circumstances or changing your relationship rather than referring to that suffering by a medical label.
00:03:40.900So it's really sort of overdiagnosis doesn't mean that a person doesn't have a problem, but it's asking the question whether referring to that problem as medical, is that really the right thing to do?
00:03:50.500And I also want to, I'm a terrible talker and you may often need to interrupt me, but at the outset you said that we are seeking this out.
00:04:00.100I'd have to say that that's not my perception.
00:04:02.320I think it's a kind of a collusion between scientists and doctors and the public.
00:04:07.100We've got tests and we want to do them and we want to find diseases at earlier stages.
00:04:12.580We are calling people forward to be medicalized, but people are equally coming forward quite willingly and allowing that to happen to them.
00:04:22.380That was one of the big takeaways that I got from your book was that one of the reasons why this overdiagnosis is happening is that we just have these tests that are available to us that weren't available decades ago.
00:04:35.100And I think what it's done, and you talk about this in the book, is that it's really maybe distorted the layperson's idea of how a diagnosis is supposed to work.
00:04:47.400So I think now with these tests, we think, well, you just take a test.
00:04:50.240You do the MRI, you do the blood test, maybe answer a few diagnostic questions, and then the doctor gives you this definitive diagnosis.
00:04:58.660But you argue with any medical diagnosis, there's an interpretive element to it.
00:05:12.620So, I mean, a diagnosis is much more of a clinical process.
00:05:17.560So that means that you have a complaint, it's a pain or it's a lump or something along those lines.
00:05:22.920And through the doctor listening to the story of what happened to you and examining you, they form a theory about what the diagnosis might be.
00:05:31.340And then the test, and I think people often think the test is then done to make the diagnosis.
00:05:36.540But really, the test is done in order to help with the clinical diagnosis a doctor has already made.
00:05:43.320Now, the important distinction here is that tests are meaningless without that first part of the stage.
00:05:48.820And I think MRI scans are a great example of this.
00:05:52.300So I have to always remind people that MRI scans only came into regular clinical use in the 1990s.
00:05:59.140So we've really only been using them in clinics for actually a relatively short amount of time.
00:06:06.240And the early MRI scanners weren't very strong.
00:06:08.660So the new scanners have only been around for 10 or 20 years.
00:06:12.860Before we had an MRI scan, it wasn't possible to look inside a healthy person safely.
00:06:19.820We didn't know what the inside of a healthy body looked like because you wouldn't do a CT scan, a CAT scan, which is the predecessor really, well, still in use.
00:06:28.280But you wouldn't do a CAT scan on a healthy person because it comes with a big dose of radiation.
00:06:33.320So you only did CAT scans if you really needed to.
00:06:36.160The consequence of that is we didn't really know what the inside of the healthy body looked like until we began doing regular MRI scans.
00:06:42.580And we'd never seen the inside of the healthy body in high definition until we got the MRI scan.
00:06:48.500Another thing I remind people then is look at how different we are on the outside.
00:07:02.580So we suddenly have this technology that allows us to look at the inside of the healthy body as we never could before.
00:07:08.020And we're suddenly finding all these differences that we, quite frankly, just didn't realize were there because we'd never looked at the inside of a healthy body before.
00:07:16.560So in the same way that some of us have big noses and some of us have small noses and some of us have birthmarks and, you know, other kind of outward differences, we also have inner differences that really don't matter in any way to our health.
00:07:28.840The minute you do a test, be it an MRI scan or a blood test or almost any test, you begin finding all these irregularities.
00:07:36.700By the time you get into your 50s, about 50% of people have an abnormality on their MRI scan.
00:07:42.560So what I'm trying to point out is that these tests will pick up loads of little things that doctors call incidentalomas.
00:07:49.420So just incidental findings that don't matter to a person's health.
00:07:53.000So the thing you find on the scan is not making a diagnosis.
00:07:57.340It is being taken in the context of the story you told your doctor and what your doctor found when examining you.
00:08:04.760And then the doctor dismisses or places emphasis on what they found in the test based on that story.
00:08:11.060The tests produce red herrings all the time.
00:08:14.020And this is the case for almost every type of test.
00:08:17.000So doctors are constantly filtering through those red herrings based on the quality of the story that they got from you.
00:08:23.520So it's not really a case of that you go to your doctor and they ultimately do the test to make the diagnosis.
00:08:30.120They'll make the diagnosis clinically and then they'll use the test to help them.
00:08:33.900So it's a real art, but the story is still really central to diagnosis.
00:08:38.220Have you noticed that younger doctors who have gone to medical school where these tests existed, they rely more on the test than maybe an older doctor who didn't have these tests when they were coming of age?
00:08:55.040Yeah, I absolutely have noticed that actually.
00:08:58.700You know, I'm sort of, unfortunately, I hate to have to admit to it, I'm getting into the older doctor territory now.
00:09:03.700You know, I'm in my 50s and I qualified as a doctor in 1991.
00:09:07.780So I qualified just before we had a real kind of technological explosion.
00:09:12.520And I think doctors of my era understand the clinical art and its importance a little bit more, not than all younger doctors.
00:09:22.200But recently, qualified doctors have all these incredibly high-tech tests at their fingertips.
00:09:28.040And I'm not sure that they've learned the art of using them as well as they could always.
00:09:34.160Of course, there's many excellent doctors, but also there are doctors dependent on technology when I think really technology is a kind of an aid rather than something you should be dependent on.
00:10:42.820I saw that difference between a younger doctor and the older doctor.
00:10:46.040Maybe that's just a situation where as she gets more experience, she won't be so test happy.
00:10:53.020Yeah, I think that probably is the case.
00:10:54.740You know, I think medicine is still really one of those careers where maturity makes a really big difference to how you practice.
00:11:01.260You learn from, you know, what you see regularly and you will become a little bit less trigger happy with tests.
00:11:07.520But your story really, it illustrates the exact problem is if you do enough tests, you'll find irregularities, especially as we get older.
00:11:16.420You know, if I do blood tests in people in their 60s, I'll rarely find that I get 100% normal tests back.
00:11:22.160There'll be lots of little irregularities.
00:11:24.340And that can really send a person down a rabbit hole, you know, because you have a test to check the test and then that test shows something.
00:11:31.740And I've seen quite a lot of people going down that sort of medical rabbit hole that led nowhere.
00:11:46.940They can also have a lot of practical impacts on people in terms of insurance and things like that.
00:11:52.620So we do need to be, I think sometimes people don't know what a good doctor looks like.
00:11:57.480And I would say to people that a good doctor isn't the doctor who, when you go to them, every time you tell them you have a pain or an ache somewhere, they do a test.
00:12:29.360So, again, you know, we're doing all these tests and we're constantly turning up irregularities.
00:12:35.560And it's really part of the clinical acumen of a doctor to know how to communicate that to their patient and what a patient can understand.
00:12:45.940So I think I use the example in the book.
00:12:48.560We can do a lot of genetic tests now and people with children who have learning problems can have quite extensive genetic tests done that sometimes show up these things that we call variants of uncertain significance.
00:13:01.420So, again, we're talking about a test here that's only been around for 20 years and is turning up results that we don't understand.
00:13:07.460And in the world of genetics, if you get a result you don't understand, you call it a variant of uncertain significance.
00:13:13.360Now, imagine you had a two-year-old child who's struggling a little bit and you get genetic tests and you're hoping those genetic tests will either tell you, you know, this is the problem or there is no problem.
00:13:24.940And instead you get that middling answer, oh, your child has a variant of uncertain significance.
00:13:32.400Could be absolutely nothing, could be something.
00:13:34.660The question that I'm really asking is if that test result tells you nothing, is it information that I need to pass on to you?
00:13:44.460I don't think there's a right answer to this question, by the way, because I think it depends on the doctor and the patient and their interaction.
00:13:51.360But if it's possible that this test result that I got back that I don't understand at all and that might be meaningless and that I can't really explain to you because its clinical significance is unknown, if I pass that on to you and you spend the next 20 years terrified for your child's health, have I really done you a favor?
00:14:10.040Or if I withhold that information, am I being paternalistic and withholding information you might want to know?
00:14:15.600So I think there's a real delicate balance in medicine about what information you share and what you don't share because our job is not to find lots of irregularities that we don't understand and then scare the living daylights out of our patients, which is becoming increasingly easy with all the tests we have available to us.
00:14:33.640So in the book, you talk about different areas where we're seeing over-diagnosis happen.
00:14:37.780Let's talk about over-diagnosis in cancer.
00:14:39.600So I think all of us have probably seen reports that cancer rates are increasing, particularly among young people.
00:14:46.040Do we know if cancer rates are actually increasing or is it that we're just catching more cancer because we're doing more screening?
00:14:55.160Yeah, I think there's pretty good evidence that cancer rates are increasing.
00:14:59.160So if I make the distinction between symptomatic cancer, so symptomatic cancer is something you found a lump where there's blood or there's pain.
00:15:06.940So you have a symptom that draws your attention to the cancer.
00:15:10.960And then the second type of cancer I'm going to talk about is cancer found on screening.
00:15:14.400And that's where you're 100% healthy, you've been called forward for screening, and someone has found something that you didn't know was there.
00:15:21.820So the first kind of cancer, symptomatic cancer, that is increasing.
00:15:25.460You know, there is evidence that people under the age of 50, younger people than ever before, are getting cancer.
00:15:31.480So I do think there's a real increase in cancer rates.
00:15:33.660Maybe it's related to lifestyle, diet, obesity, etc.
00:15:37.740But we also have a problem of over-diagnosis in this group of screened cancer.
00:15:43.980So this is where people are being called forward and having mammography or blood tests to try and detect cancer that they haven't detected because they're perfectly well.
00:15:52.440This type of cancer is subject to huge over-diagnosis, which I think might be a little confusing to people.
00:15:59.640But we're back into that sort of territory of the inside of the healthy body is riddled with little irregularities.
00:16:08.620And until we got the technology to find them, we didn't know that people lived out their lives with these super early-looking cancer cells that never grow and never cause health problems.
00:16:21.920So if you do autopsies in lots of people who died for other reasons, you find little abnormal cells that would be technically considered to be cancerous, but they never grew enough to cause health problems.
00:16:32.820The problem is when you do screening, you find these irregularities.
00:16:38.960They were there in previous generations.
00:16:41.100We didn't know they were there in previous generations because we never looked at them.
00:16:44.920We started screening in, say, the 1970s.
00:16:47.500Pre-1970s, we didn't know that people lived out their lives with little abnormal cells that never grew into anything dangerous.
00:16:54.980Post-screening, we're now finding these things.
00:16:57.620But we cannot tell the difference between an abnormal cell that will become malignant, life-threatening cancer and an abnormal cell that won't become malignant, life-threatening cancer.
00:17:08.220And the consequence of that is we kind of have a tendency to treat all of them as equal when they're not really equal.
00:17:14.740So a lot of people who are treated for cancer and screening probably would have been perfectly fine if we never treated them.
00:17:20.860I hasten to say I don't want to put people off from screening with this conversation.
00:17:26.020You know, if there are screening programs, it's reasonable for people to present themselves for that.
00:17:32.140But they need to know about the uncertainties of the results so they can have a good conversation with their doctor about what they do if they got a positive result.
00:17:40.680So, for example, if I have breast cancer screening and I was found to have an abnormal cell, I wouldn't necessarily automatically say, well, I want, you know, all bells and whistles cancer tests and treatment.
00:17:52.760I might say, well, if it's a very small localized abnormal cell and I know about these things, perhaps can we just do another scan in two months' time and another scan two months' time after that and see if it's growing.
00:18:05.520So there are different ways of addressing these abnormalities when they're found and that's what I want people to take away from this.
00:18:14.980What's interesting, though, with all this, and this is kind of counterintuitive because I had a hard time wrapping my head around this, is that overall mortality rates for cancer are down.
00:18:26.480And so people would think, well, that's because, you know, we're just catching this stuff earlier, so the early screenings work.
00:18:31.940But that's not entirely what's going on.
00:18:34.920Well, it's a little bit of mixture of things and it is kind of a hard thing to wrap your head around.
00:18:38.780And certainly people are surviving from, say, symptomatic cancers, so cancers that unequivocally need to be treated.
00:18:44.700People are surviving better because cancer treatments are better.
00:18:47.500You know, there used to be no treatment for melanoma and now there is a treatment.
00:18:51.240So, you know, treatments for cancer are getting better.
00:18:54.760However, we also have these sort of really kind of difficult to interpret cancer survival statistics from people who are getting diagnosed with cancer from screening.
00:19:05.420So just imagine that you screen a thousand people for cancer and let's say a hundred of those were destined to get symptomatic cancer at some point in their lives.
00:19:16.340But you overdiagnose 300 people and you treat all of those 300 people for cancer.
00:19:23.020Well, 200 of those 300 were never going to get symptomatic cancer in the first place.
00:19:28.320But if you now look at how successfully you treated those people, the results will look really optimistic.
00:19:36.640Therefore, they didn't get cancer and therefore they didn't die of cancer, but they were never going to anyway.
00:19:41.580I hope I'm making sense here because it's, you know, if you overdiagnose people with cancer and you treat too many people for cancer, you will make cancer survival statistics look a lot better than they actually are.
00:19:53.600And that's why a more useful way sometimes at looking at how successfully we're treating cancers that are found on screening is to look at what we call all-cause mortality.
00:20:16.480And there was a really sobering study published, I think it was in the Journal of the American Medical Association in 2023, in which they looked at all-cause mortality for people who'd been diagnosed with cancer and screening for a whole bunch of cancers like colon, prostate, breast.
00:20:32.900And they found that they had not prolonged any lives in most of the groups through cancer screening.
00:20:40.140In the colon cancer group, they had prolonged life by three months, but in the other groups like prostate and breast, people did not live any longer courtesy of their screening and cancer diagnosis.
00:20:51.280And the reason for that is if you're overdiagnosing, so you screen people, you save somebody's life for sure.
00:20:58.040So you found somebody who had cancer that was going to grow, you found it, you treated it, you saved that life.
00:21:03.420But probably there are 10 or 20 other people who you treated who never needed to be treated.
00:21:10.660And now you have negatively impacted the health of those 20 people.
00:21:15.820So you've saved one person's life, but you have affected the health negatively of 20 or 30 other people who might die of complications of treatment, for example.
00:21:26.380So you're saving some lives, but you are having a very negative impact on others.
00:21:30.980So it's a kind of zero-sum game, you know, yes, some people are safe, but other people are given unnecessary treatment that is dangerous to them.
00:21:41.880Yeah, you know, people always relate very strongly to the life that was saved in these questions, because we all know people with cancer and we know people who've died of cancer.
00:21:52.680I don't think we think long or hard enough about the people who got the unnecessary treatment, because, you know, radiotherapy, chemotherapy, operations, these are really enormous things physically.
00:22:05.880But also the psychological impact of being told you have cancer is absolutely enormous.
00:22:11.000And then we've got the kind of financial impact in terms of insurance or jobs or applying for mortgages going forward.
00:22:17.840So we've got a very kind of strong focus on saving that one life.
00:22:30.200One area in cancer where you see a lot of overdiagnosis due to screening, there's a lot of debate around it, is prostate cancer.
00:22:38.540Why is prostate cancer so prone to overdiagnosis?
00:22:42.300Yeah, I mean, you know, so prostate cancer, it's because the type of screening they do for prostate cancer at the moment.
00:22:50.160Now, this will change and people are working on improving this.
00:22:53.440But at the moment, the most common type of screening is just to measure a blood test for a prostatic specific antigen.
00:23:00.580So this is sort of a blood test that if it is elevated, it doesn't mean you definitely have prostate cancer, but it means that you could potentially have prostate cancer.
00:23:10.160The problem with that test is it's just completely unreliable.
00:23:14.580You know, I draw people's attention to the fact that there is no national screening program for prostate cancer in the U.S. or in the U.K. or in most countries in the world.
00:23:24.480And that's because this particular test has such a reputation for overdiagnosis.
00:23:29.600You know, studies are really differ on these statistics, but to give people a rough idea, if you screen a thousand men for prostate cancer using PSA, you will likely save one life, but you will probably find an elevated prostate in about 240 or 250 people.
00:23:47.280That's a lot of men who are now kind of going to go on a diet.
00:23:51.700They won't all be diagnosed with prostate cancer, but they will all be started on a kind of diagnostic odyssey of do they, don't they have prostate cancer and tests and screening.
00:24:00.640A small number of them will have biopsies and a small number of them will be told that they do have prostate cancer.
00:24:06.360But most of those never needed to know that because as men get older, a huge number of them develop cancerous cells in the prostate that never progress.
00:24:17.860So there was an interesting study done in Detroit where the autopsies were done on people who had died in accidents and things unrelated in any way to the prostate.
00:24:27.700And they found that 45% of men in their 50s have abnormal cells in the prostate and 60% of men in their, might have that statistics, might be slightly low actually, of men in their 60s have abnormal cells in the prostate.
00:24:41.280So as men get older, they all get abnormal, a large number get abnormal cells in the prostate.
00:24:46.740And once you start screening for that using prostate specific antigen, you'll overdiagnose lots and lots of men.
00:24:52.800So the unreliability of the test is the reason we don't do this.
00:24:56.120Now, I think the solution to this is to screen the right people.
00:25:01.040So there are men who are at higher risk of prostate cancer than other people, people with family history of prostate cancer, for example.
00:25:07.700Black men are more likely to have prostate cancer.
00:25:10.480So you can still do screening, but screening is more meaningful if it's done in people who are at high risk.
00:25:17.740Whereas if it's done in people with low risk, it can produce very unpredictable results.
00:25:22.500And also, if a person is really concerned about their health, they may still wish to discuss getting a PSA test with their doctor.
00:25:29.720But it's important they know before they have that test done how uncertain the interpretation of the results will be.
00:26:33.140I mean, you know, you will save the occasional life through this type of screening, but you will send a lot of people on this very, very unpleasant road of tests.
00:26:42.500So they're working, obviously, very hard on improving this screening.
00:26:46.360And in the future, I hope that things will be better.
00:26:48.520But at the moment, there is no national screening program for a reason, and that's worth thinking about.
00:26:54.600We're going to take a quick break for your words from our sponsors.
00:29:20.000You know, you don't only have better healthcare, you also have better lifestyles, etc.
00:29:24.100But they found something else that is worrying.
00:29:26.800They found that much more people were being diagnosed with cancer in the high-income countries than in the low-income countries.
00:29:34.080But the cancer survival rates for those cancers were actually quite similar.
00:29:38.100So, it seemed like a lot of people in high-income countries, by virtue of having more tests and more high-quality tests, are being diagnosed with cancer potentially unnecessarily.
00:29:50.520No extra lives were saved by all the extra cancers being diagnosed.
00:29:54.440The paper estimated that, you know, for every cancer diagnosis through all of this availability of technology, 10 probably weren't necessary.
00:30:02.080So, you know, I know that the NHS has a great deal of problems.
00:30:08.600It needs to be a lot better funded than it is.
00:30:12.300But there is something to be said for the lack of financial dealings between patient and doctor.
00:30:26.560I don't need them to come back to me to be paid and so forth.
00:30:29.320And there's something in this kind of financial transaction between patient and doctor that is potentially harmful.
00:30:35.460And I don't think people always realize that.
00:30:38.160Another area you talked about where there could be some over-diagnosis going on is diabetes.
00:30:44.280And it's because the diagnostic boundaries have shifted in the past, I think, decade.
00:30:50.900What was that change and how has that led to over-diagnosis?
00:30:55.520Yeah, so this is a trend in medicine in multiple different areas of medicine.
00:30:58.980So, you know, there's lots of medical problems, which the diagnosis isn't based on there being an abnormality.
00:31:04.820It's based on drawing a line between normal and abnormal.
00:31:08.140Like what level of blood sugar are we willing to accept as normal?
00:31:11.640What level of blood pressure are we willing to accept as normal?
00:31:14.940And we've had this assumption in medicine that if we kind of keep moving that, if we can detect more and more people with borderline diabetes or borderline hypertension or borderline obesity, borderline mental health problems, that we will help more people.
00:31:31.960And therefore, we keep adjusting the line between normal and abnormal to diagnose more and more people.
00:31:37.440So I think it was in about 2003, we had created this condition called pre-diabetes.
00:34:01.740It's a weird sort of like it's not actually a disease, pre-diabetes.
00:34:05.340It's like a pre-disease state, but it sounds very much like a diagnosis.
00:34:09.780And in one sense, it could be a great thing.
00:34:11.640So it depends really on your mindset and your lifestyle and how you respond to news.
00:34:15.460You know, if I was told that I had pre-diabetes, then perhaps I would respond by improving my diet and exercising a bit more and trying to lose some weight.
00:34:25.040And, you know, it could have a really positive impact on me.
00:34:27.240It could be a really good thing for my long-term health.
00:34:31.720But somebody else might respond differently to that.
00:34:33.780If you take a healthy person and tell them, you know, now because of this blood test, I consider you a patient, that can have a very negative impact on other people.
00:34:42.380It can affect, if you turn a person into a patient, they can start behaving like a patient.
00:34:47.280They begin noticing things about their body.
00:34:50.380You know, being told that you're unhealthy turns your attention inwards to your body.
00:34:54.120And then you start noticing little things and worrying about symptoms you didn't worry about before.
00:34:59.780You know, in a sense, the creation of pre-diabetes, we created it to protect people's long-term health.
00:35:05.960But we've underestimated the impact of the news that you have pre-diabetes on a person, how that might affect their kind of self-concept and how it might affect how they feel about their body and so forth.
00:36:01.440You know, again, I kind of remind people of how different we are on the outside.
00:36:05.260And, you know, these sort of differences exist on the inside too.
00:36:08.900And it doesn't have to be an abnormality.
00:36:10.580And in a sense, you made the important point there, which is you are otherwise a very healthy person.
00:36:15.540You know, these things have to be taken in context.
00:36:18.140If I was told I had pre-diabetes and I was also a smoker and, you know, my father had heart disease and my mother had a stroke and I've also got borderline high blood pressure, well, then these are issues that need to be addressed.
00:36:31.280But if you're otherwise a very healthy person with a borderline blood test abnormality, then you don't necessarily have to be so worried about it.
00:36:39.520So we need to take these things in context and not be terrified of every abnormal result.
00:36:45.120You mentioned high blood pressure has undergone a change similar to diabetes in how we define it.
00:36:51.260Yeah, I mean, you know, so there's this thing sort of borderline hypertension, which I guess is the same as pre-diabetes.
00:36:57.560You know, your blood pressure is kind of in that border area.
00:37:00.360You're not really hypertensive, but you could spill over into that region.
00:37:03.660The level of blood pressure required to have borderline hypertension just keeps shifting.
00:37:09.520And in the U.S. now, borderline hypertension is a measure of 130 over 80.
00:37:15.320Now, when I was in medical school in the 1980s, 130 over 80, you'd be delighted with that blood pressure.
00:37:21.120That's perfectly normal blood pressure.
00:37:23.140Whereas now, if it's a little bit higher than that, you potentially could be offered, well, you will definitely be offered lifestyle changes, but you could also be offered drug treatment for that, something which would have been considered completely normal two or three decades ago.
00:37:37.500In Europe, we use a slightly more generous cutoff, more around 140 over 80 or 140 over 90, because these are arbitrary cutoffs.
00:37:45.700No one knows where normal blood pressure begins and ends, so committees of experts get together and make arbitrary cutoffs.
00:37:55.000And when they do that, when the change was made to decide that blood pressure should now be normal up to 130 over 80 and abnormal above that, that immediately made a third of American adults a borderline hypertensive, which is just astonishing statistics.
00:38:11.640Can it really be true that a third of adults in the U.S. are borderline hypertensive?
00:38:18.200The purpose is prevent heart disease, prevent strokes.
00:38:21.340But how many people with borderline hypertension do you have to treat to prevent a stroke?
00:38:26.360Well, that could be, if I treat every single person I meet with borderline hypertension, I might prevent, you know, one stroke per 1,000 people, but I might treat 150 people who never needed to be treated.
00:38:39.780So you're always, with these adjustments, you're always saving somebody, but equally, you can be guaranteed you're overtreating a great deal, many more people.
00:38:50.540So you're probably, you know, per life save, you're probably overtreating 100 and 150 people.
00:38:55.080But that's, you know, that's okay if it's just a little kind of reminder to be healthy.
00:38:59.380You know, if you're the person who goes to your doctor and they say you've got borderline hypertension and then you go home and your lifestyle is suddenly transformed by the news, well, then that's been great for you.
00:39:11.240But you could be the person whose life is taken over by concern about your blood pressure or who goes on tablets and gets side effects that makes you sick when you weren't sick before or whose health insurance goes so high that you can no longer afford it.
00:39:24.920So we have to think of both sides of it.
00:39:27.620Another area you talk about where there's a lot of overdiagnosis is Lyme disease.
00:39:33.980Why is Lyme disease so hard to diagnose?
00:39:37.420And why is it vulnerable to overdiagnosis?
00:39:40.640You know what, the first thing I'd say is I don't think Lyme disease is hard to diagnose.
00:39:44.120Lyme disease is very well defined clinical criteria and, you know, no test is 100% reliable, of course, but pretty reliable two-stage blood testing.
00:39:55.140There's two stages of blood testing you have to make the diagnosis.
00:39:58.300So actually, I'd say diagnosing Lyme disease is relatively straightforward.
00:40:04.180The reason it's so overdiagnosed is twofold.
00:40:08.260One, because Lyme disease causes a huge array of symptoms, many of which are symptoms that any one of us could, you know, have probably experienced at some point in our lives, like fatigue, joint aches and pains.
00:40:21.340You know, just these kind of nonspecific symptoms that are part of loads and loads of different medical problems, including psychiatric problems, but also physical problems and also aging.
00:40:33.200So that makes Lyme disease very available to overdiagnosis.
00:40:36.220If you go to your doctor tired and they can't think of any other explanation, well, Lyme disease is one that can be provided if you are desperate for an explanation.
00:40:44.760That's one reason I think it's overdiagnosed.
00:40:46.780It's in a world where people are suffering and want answers, it's an answer.
00:40:51.220The other reason it's overdiagnosed is because the tests are misused, really.
00:40:56.500You know, as I've said before, tests need to be taken in a context.
00:41:00.300The tests for Lyme disease have lots of reasons you can have a positive test but not have Lyme disease.
00:41:05.180So if you spent your whole life, you grew up, you know, living beside a forest in Connecticut where there's loads of Lyme disease, chances are that in childhood you were exposed to Lyme disease and developed immunity.
00:41:17.280And later in life, if you have a blood test, you can test positive for Lyme but not have Lyme disease.
00:41:21.980Or maybe if you're sick in some other way, you'll get a false positive on the test.
00:41:26.000So the tests are easily misinterpreted and you've got a disease that has symptoms that overlap with so many other things.
00:41:33.980And you've got a society that needs explanations when they're not feeling well.
00:41:39.560And if explanations aren't readily available, then Lyme disease will account for quite a wide range of symptoms.
00:41:46.980Then you also have an element of corruption added in here.
00:41:50.520You know, if you have a diagnosis that is available to give to people who are desperate for an explanation and you work as a private doctor in this area,
00:42:02.220then overdiagnosing is very, very simple because of the uncertainties in the blood tests.
00:42:07.980Yeah, I thought it was interesting you talk about, there's a surprisingly large number of people who have been diagnosed with Lyme disease in Australia,
00:42:16.820but Lyme disease, the bacteria that causes Lyme disease, doesn't exist in Australia.
00:42:23.120Yeah, I mean, this really speaks to the problem.
00:43:32.600And yet something in the region of half a million people are being treated for Lyme disease.
00:43:36.980So the number of people being overdiagnosed is very high.
00:43:39.860And I think that's because it's an available explanation for symptoms that people struggle to explain.
00:43:45.460And I think it's also because there is a problem with people essentially giving out slightly over exuberant diagnosis for monetary reasons.
00:43:57.840What do you think is going on with these people who, you know, they get the diagnosis of Lyme disease,
00:45:39.580You know, if you're stressed, you get a headache.
00:45:41.540Or if you're just very tired or not looking after yourself, you're more likely to pick up colds and flus or you get aches and pains.
00:45:50.240So our bodies are very vulnerable to developing physical symptoms in response to psychological stressors.
00:45:58.040And very common symptoms in that context are things like tiredness and aches and pains.
00:46:02.580I actually see people with much more extreme versions of this, with seizures, paralysis, blindness, and so forth.
00:46:09.420I think a great many of these people have psychosomatic symptoms.
00:46:12.140But we live in a society that looks down on psychosomatic symptoms.
00:46:18.360So, you know, if somebody is very sick, if they're bedbound because they feel so bad, they literally can't get out of bed,
00:46:25.360and you learn that the problem has more of a psychological cause than a physical cause, that's looked down on.
00:46:30.380You know, we don't have a lot of respect for that.
00:46:32.580And that pushes people into the need to find an explanation that society is more understanding of.
00:46:38.640And usually that's a physical disease.
00:46:41.060So I think there's a lot of people who have an array of physical symptoms that probably arise out of psychological distress,
00:46:47.760but which are diagnosed as a disease because that's the culture we live in.
00:46:52.640You know, psychological suffering is not respected to the same degree as physical disease.
00:46:57.660And you talk about once someone gets a medical, a biological diagnosis for what could be psychosomatic,
00:47:06.340it causes the nocebo effect where you start paying more attention to your body and thinking,
00:47:13.820oh, this shows that I have this thing.
00:47:16.000And it just sort of creates this vicious cycle downwards.
00:47:21.120Yeah, I mean, this is the problem with all the medical labels we've been talking about.
00:47:24.420This is the problem for the people with hypertension, the people with prediabetes, the people with cancer, etc.,
00:47:29.640is that once you're given a medical diagnosis, it can have, you know, it's, everyone's familiar with the placebo effect,
00:47:37.060which is if you're given a tablet and you believe it will work, it can alleviate your symptoms.
00:47:41.780The exact same happens in the opposite direction referred to as the nocebo effect.
00:47:46.620So this is where, you know, if you believe something will make you sick, it can make you sick.
00:47:51.580I always say to people, listen, there is examples of this in everyday life everywhere.
00:47:55.400You know, if you were about to sit down to your dinner in a restaurant and you turned around and you saw the chef coughing into the food,
00:48:01.720it would immediately changes your experience of your body following what you've just eaten.
00:48:07.200You know, if you eat something and then you suspect it was unhygienic after the fact, you can start feeling sick.
00:48:13.100This is the most normal thing in the world.
00:48:15.560So imagine now that somebody has told you that you have a disease and that it causes, you know, X number of symptoms.
00:48:21.960You immediately kind of look at your body and begin examining yourself for those symptoms.
00:48:26.380And I guarantee you, especially as you get older, your body is awash with things to be found if you pay enough attention.
00:48:34.520You know, that aching knee that, you know, it only lasted a day.
00:48:37.940Normally you dismiss it, but you've just been told you have Lyme disease.
00:48:40.860And now you place a lot of emphasis on that aching knee, whereas you might not have worried about it yesterday.
00:48:46.900Or, you know, some little mole on your skin suddenly gets heightened in your perspective through anxious attention.
00:48:53.240This is the problem with medical labelling is it reinforces, it's not in everyone, but in a percentage of people, it can reinforce symptoms by turning anxious attention to your body.
00:49:03.780And really worrying less about your health is sometimes the answer.
00:49:07.960There's been an increase in mental health diagnoses in the past few decades.
00:49:12.920Are there actually rising rates of mental health issues or are we diagnosing people that maybe don't need a diagnosis?
00:49:20.220Yeah, so it's such a super hard question to answer in the sense that it's so hard to untangle.
00:49:27.120You know, in one sense, there does seem to be evidence that suggests that particularly in the group of adolescents to young adults, say age 16 to 24,
00:49:36.540there does appear to be more mental health issues in this group, for example, more than any other.
00:49:43.080And that means they're more likely to go to their doctor with symptoms and also that they have more mental health symptoms.
00:49:48.620But does that mean that there is more mental health illness in this group?
00:49:55.180Because that can be explained in so many ways.
00:49:57.320It could be that we've got all these awareness campaigns going now, often targeted at young people and awareness campaigns in schools that bring people's attention to mental health problems.
00:50:08.820So are they going to their doctor because they've been given express instruction to examine themselves for problems and they're finding things we wouldn't have found before because we didn't think that way?
00:50:20.580Are they more symptomatic because of the anxious attention that they're paying to their moods or are they genuinely more symptomatic?
00:50:27.220So I think it's really hard to untangle to what degree is the fact that young people have more mental health problems there?
00:50:34.740Because we have created that through awareness campaigns, through telling people to worry about small changes in mood, or is it a real increase in mental health problems?
00:50:45.480But I think whatever conclusion you come to on that, you have to say that there is an over-diagnosis of conditions like ADHD and autism.
00:50:56.540Now, again, I emphasize that when I talk about over-diagnosis, I'm not saying this person isn't suffering and you should ignore them and tell them to snap out of it.
00:51:05.740I'm saying that adolescents sometimes have struggles and by over-diagnosis, I mean medicalizing those struggles by referring to them through labels of ADHD and autism might be harmful to them.
00:51:19.240The reason I say there's over-diagnosis is it's very hard to spot over-diagnosis in individuals.
00:51:24.340So let's say you've got a 16-year-old and they've been told they have ADHD and they're validated by the diagnosis and they feel better.
00:51:32.980You can't really tell, but you can tell by looking at the population.
00:51:36.960So we've been making mental health diagnosis at escalating rates since the 1990s.
00:51:42.260We've been telling young people they have ADHD and autism at escalating rates since the 1990s.
00:51:48.080Now, the purpose of seeking out those young people and giving them those labels is that their problems should be recognized, they should get support, and then they should be happier, healthier, better adjusted adults.
00:52:01.860We've got way more teenagers getting diagnosis of ADHD and autism, but we also have way more young adults who now have mental health problems like depression and anxiety.
00:52:13.100And that's the very definition of over-diagnosis.
00:52:16.120It's not to say that original group who were told they had autism and ADHD didn't have a problem at all, but it seems to me that framing their problem through these lenses of autism and ADHD has not resulted in healthier and happier adults.
00:52:30.340And we really need to rethink what we're doing.
00:52:33.100My real fear is that you take an adolescent and you tell them that their communication problems are abnormal and due to a brain chemistry abnormality or that their sort of attentional difficulties are not because they're a teenager and teenagers have attentional difficulties, but because they have a dopamine abnormality in their brain.
00:52:52.860Then you potentially make that problem so concrete that a child can't overcome it, adolescence is a time of change.
00:52:59.480You should have the opportunity to mature out of your difficulties or to work on things.
00:53:04.160And I'm afraid that because we tend to make diagnosis and then accommodate to them, we're not giving children the chance to make the changes that we all made.
00:53:15.860People get really touchy about this, particularly around ADHD and autism.
00:53:21.900I know it can get very heated, the debates about it.
00:53:26.780Yeah, I think it's mostly because people kind of understand this conversation to mean that their difficulties are being dismissed as irrelevant or they don't have struggles.
00:53:37.120And that's certainly not how I feel about it.
00:53:39.580I think that adolescence in particular is a real time of difficulty, but also people who are getting diagnosis in older age.
00:53:46.980I believe the difficulties are real, but I don't think medicalizing the difficulties with these labels is the right thing to do.
00:53:55.000So I wouldn't wish in any way for anyone to feel that I'm saying we should go back to the old days where everyone was told to snap out of it.
00:54:02.620Or, you know, I was in school in the 80s.
00:54:05.040You know, nobody in my class of 120 was recognized as having a special learning need.
00:54:09.420There must have been someone, you know, so we had an underdiagnosis problem.
00:54:13.260I'm not suggesting we should go back there, but I'm suggesting that we should think about how we are helping struggling people and ask if it's the right kind of help.
00:54:25.280I still think we should, if someone has a problem, then they need to be able to voice it and then their problem needs to be acknowledged.
00:54:32.340But is then attaching a medical label the right way to go about things?
00:54:37.000And I know that it can make people feel validated and I don't want to take that away from people.
00:54:42.220But I think that a diagnosis needs to come with something more than validation.
00:54:46.040It needs really to lead to something more positive.
00:54:50.920Unfortunately, when you're validated by a diagnosis, it can just make the symptoms worse.
00:54:55.780Because in order to remain validated and remain part of this new tribe that you belong to, courtesy of your diagnosis, you have to continue to not be well.
00:55:06.160Getting well means you lose your tribe and you potentially lose your diagnosis.
00:55:10.540So how do you get well in those circumstances?
00:55:12.640I think we're better to frame our difficulties in terms of, you know, what in my life can be changed to make me feel better, rather than framing them through internal chemistry.
00:55:24.420And in the case of ADHD, I mean, one of the things you do to treat it is, you know, prescribe Ritalin or Adderall.
00:55:32.200Which, I mean, those are Schedule 1 substances.
00:55:34.000Like, those can be highly addictive substances.
00:55:36.680And it's like, well, maybe you don't need to get on that if you don't need it.
00:55:39.880You know, it's interesting how badly we learned from the past.
00:55:43.960You know, we had a whole benzodiazepine crisis in the 80s.
00:55:47.740You know, it seemed to be a drug that did amazing things for people, but then people got highly addicted to it.
00:56:00.160We're not very good at learning from the difficulties of the past.
00:56:03.600You know, I'd be very loathe to take a medication that is fundamentally a stimulant, which is an amphetamine-like drug, unless I knew I had to take it.
00:56:12.820Now, that's not to say that I don't think there's a role for medication.
00:56:15.820There will always be people who have extreme disability.
00:56:19.560There always are hyperactive children who are so hyperactive, they really cannot engage in education.
00:56:25.360And they may need something to help them through a difficult period.
00:56:28.480So I'm not a kind of never say never, but this wide prescribing of stimulant drugs seems really ill-advised to me.
00:56:36.820So what do you think the right balance is between diagnosing too much and not diagnosing enough?
00:56:42.820Like, what do you want readers to take away from your book the next time they're dealing with a health concern?
00:56:48.680Yeah, so I think what's really important is, first of all, you know, that you have choices very often.
00:56:54.620And I think that's something people don't really realize.
00:56:57.580Most medical situations are not urgent.
00:57:00.820So we have occasional emergencies, but most things you go to your doctor with, you can get a test result and you can think about it.
00:57:07.000So I think that we should be creating a system of more slow medicine where you get test results back and then you consider all the variables.
00:57:16.140What else in your life might put you at risk of this particular disease?
00:57:20.200So that you can decide whether you need to react urgently or whether you may be someone who doesn't have to worry and can go down a more watchful waiting pathway.
00:57:29.000I think it's very useful for people to understand the uncertainties in test results because it might feel like the best thing in a certain circumstance is to have that blood test or to have the scan.
00:57:41.160You know, a lot of neurologists wouldn't have a brain scan as it happens.
00:57:44.600And I think it's useful for people to know that, that sometimes the scan that you have to relieve your anxiety can actually cause more anxiety.
00:57:53.780I really want people to just do a balancing exercise when it comes to diagnosis.
00:57:58.180Ask themselves before they get that mental health diagnosis or ADHD or autism diagnosis, if I get this diagnosis, what will I get?
00:58:06.180What will it bring me that is positive?
00:58:07.940And if I get this diagnosis, what are the potential negative impacts of that diagnosis?
00:58:14.820And you really need to be sure that what you get is substantially greater than what you lose through a diagnosis.
00:58:21.120Well, Suzanne, this has been a great conversation.
00:58:23.160Where can people go to learn more about the book and your work?
00:58:26.000Well, I hope everybody will buy the book, which is called The Age of Diagnosis, How Our Obsession with Medicine is Making Us Sicker.
00:58:31.840So, you know, I feel like sometimes when I talk about this subject, people might think I'm an outlier doctor that, you know, who is this doctor coming along and saying all of these kind of slightly scary things.
00:58:43.220But actually, everything I'm talking about is widely discussed within medicine.
00:58:47.520We're just not having a good enough public conversation yet.
00:58:50.620Well, Suzanne O'Sullivan, thanks for your time.