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Preventing over-diagnosis: how to stop harming the healthy

OVER-DIAGNOSIS EPIDEMIC – In the first instalment of a nine-part series Ray Moynihan outlines the growing problem of over-diagnosis. If you haven’t heard much yet about the problem of over-diagnosis, rest…

Over-diagnosis happens when people are diagnosed with diseases or conditions that won’t actually harm them. www.shutterstock.com

OVER-DIAGNOSIS EPIDEMIC – In the first instalment of a nine-part series Ray Moynihan outlines the growing problem of over-diagnosis.

If you haven’t heard much yet about the problem of over-diagnosis, rest assured you soon will. In recent weeks, an editorial in a leading medical journal in the United States has dubbed over-diagnosis a “modern epidemic”; in Britain the BBC has just broadcast a two-part investigative series on it; and today this website kicks off a two-week long exploration of the problem.

To put it simply, over-diagnosis happens when people are diagnosed with diseases or conditions that won’t actually harm them. It happens because some screening programs can detect “cancers” that will never kill, because sophisticated diagnostic technologies pick up “abnormalities” that will remain benign, and because we are routinely widening the definitions of disease to include people with milder symptoms, and those at very low risk.

A growing problem

There’s a small but growing scientific literature on the problem of over-diagnosis across many different conditions, from ADHD to malaria. Some of the strongest evidence comes from the world of breast cancer, with suggestions from a recent systematic review that up to one in three women diagnosed through mammography screening may, in fact, be “over-diagnosed”. In other words, their cancer may not kill them.

There are varying estimates, and the evidence is still being gathered, but as you will learn from tomorrow’s article, the problem of over-diagnosis of breast cancer demands much greater attention.

Josh Kenzer

Another powerful example is the condition known as pulmonary embolism – blood clots that can cause heart attacks and death. The problem here is that technology is increasingly allowing us to see smaller and smaller clots, leading to a big increase in the numbers of people being diagnosed and treated.

As researchers start to investigate the problem of over-diagnosis, they’re finding growing evidence that many people may be being diagnosed and treated unnecessarily. As that editorial in the Archives of Internal Medicine said, “Pulmonary embolism is a model for the modern phenomenon of overdiagnosis.” (Sadly, this editorial is behind a paywall – Ed.)

At the same time, ever-widening definitions of disease are catching increasing numbers of healthy people in the net of illness, particularly with the fashion now for creating “pre-diseases”. Pre-hypertension – created as a new diagnostic category in 2003 – is highly controversial, with some senior figures rejecting it as a pseudo-syndrome designed to expand the market for drugs.

There are similar controversies around “pre-diabetes” and “pre-osteoporosis”, arbitrary labels that expose tens of millions of people to powerful, costly and sometimes lifelong treatments that may do them more harm than good.

But why?

The problem of over-diagnosis may well have resulted from the best of intentions – too much of a good thing. The idea of early diagnosis, of getting in and nipping things in the bud, makes intuitive sense, but we are increasingly realising it’s a double-edged sword.

Not everyone with the early signs of a disease, or at risk of future illness, will actually go on to develop it. Treating essentially healthy people as if they were sick may not only cause them harm, but can also pull precious resources from those who can actually benefit from diagnosis and treatment.

As my co-authors and I outlined in an article in the British Medical Journal (BMJ) earlier this year, the drivers of this phenomenon are complex and multifaceted. These include professional and commercial self-interest; litigation fears; our cultural love affairs with early diagnosis and the wonders of technology; and the nature of the health system itself, where a fee-for-service system brings benefits for doing more tests, more treatments, more procedures. But research evidence is starting to suggest that, in many situations, less may be more.

Swallowing pills from Shutterstock

In April this year, folks at Bond University’s Centre for Research in Evidence-Based Practice hosted a small gathering on over-diagnosis. The participants decided to organise a bigger international meeting to be held exactly a year from today (10th to 12th September, 2013), at the Dartmouth Institute for Health Policy and Clinical Practice, in Hanover New Hampshire in the United States.

Dartmouth is a natural home for the conference, not least because of a powerful book by three of its academics last year, Overdiagnosed: Making People Sick in the Pursuit of Health. It’s an accessible, rigorous and scholarly work on the topic, which is highly recommended.

In partnership with the BMJ and leading US consumer organisation Consumer Reports, the conference is designed to bring together research and researchers from around the world to talk about how to improve methods, enhance communication, and develop policy responses to the problem. Click here to learn more about the conference.

Over the next two weeks The Conversation will be running a timely and informative series of articles about different aspects of over-diagnosis – a topic of growing interest to professionals, the public and policy-makers. This a great opportunity to work together to try and deepen our understanding of the problem, and develop solutions to it.

A special thanks to Ray Moynihan for his assistance with this series – Ed.

Have you or someone you know been over-diagnosed? To share your story, email the series editor.

This is part one of our series on over-diagnosis, click on the links below to read other articles:

Part two: Over-diagnosis and breast cancer screening: a case study

Part three: The perils of pre-diseases: forgetfulness, mild cognitive impairment and pre-dementia

Part four: How genetic testing is swelling the ranks of the ‘worried well’

Part five: PSA screening and prostate cancer over-diagnosis

Part six: Over-diagnosis: the view from inside primary care

Part seven: Moving the diagnostic goalposts: medicalising ADHD

Part eight: The ethics of over-diagnosis: risk and responsibility in medicine

Part nine: Ending over-diagnosis: how to help without harming

Join the conversation

45 Comments sorted by

  1. Tracy Heiss

    logged in via Facebook

    Some years ago I read Selling Sickness: How the World's Biggest Pharmaceutical Companies Are Turning Us All Into Patients by Moynihan. I'm encouraged by a renewed dialogue on this subject matter, and look forward to this series. Thank you.

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  2. Max Clifton

    logged in via Facebook

    In the case of screening mammography, what you fail to mention is that there is as yet no way to distinguish a lethal from a non-lethal breast cancer when it is diagnosed. Until this is possible the concept of overdiagnosis is moot.

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  3. Monika Merkes

    Honorary Associate, Australian Institute for Primary Care & Ageing at La Trobe University

    Thank you Ray Moynihan and Reema Rattan for bringing this issue to a broader audience. I'm looking forward to reading the articles over the next two weeks.
    Three years ago, I was diagnosed with pre-diabetes. My GP suggested I change my diet, and six months later my blood glucose levels had dropped back to normal (as did my cholesterol levels). Initially I found it hard to believe that giving up dairy products (I had been a vegetarian for some 25 years) and gluten together with increasing my vegetable intake would make such a difference. I also lost 8 kilos.
    My GP practices integrative medicine.

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    1. Sue Ieraci

      Public hospital clinician

      In reply to Monika Merkes

      Ms Merkes experience is one example of how a tighter diagnostic net can help improve health outcomes. A trend was detected early, preventive measures were put in place, and the disease was averted (or at least delayed).

      Dietary modification is the mainstay of mainstream treatment for
      pre- or mild diabetes - whether the practitioner is "integrative" or not.

      This case illustrates how a blood test can detect a trend before the clinical manifestations.

      It is important to distinguish different types of screening - whether the screening is for modifiable risk factors or for diagnoses. Perhaps the author could clarify this distinction more.

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    2. Monika Merkes

      Honorary Associate, Australian Institute for Primary Care & Ageing at La Trobe University

      In reply to Sue Ieraci

      Well, the mainstream GP who first diagnosed my pre-diabetes suggested monitoring and medication if it got worse, as in her view I was already doing all the right things - I was of normal weight, went to the gym five times a week plus daily dog walks, and had a healthy diet. I sought a second opinion from a GP who practices integrative medicine and from her - during an extensive consultation of about one hour - got the advice that resulted in normal blood glucose levels.

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  4. Tony P Grant

    Neo-Mort

    Western Life Style plus the "Professional Plot" aided often by levels of science have given us our current position.
    We are a very pampered group while "third world children" die each day in the thousands from lack of calories and disease!
    Self-indulged and anything but humane!

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  5. Peter Ormonde

    Farmer

    Looking forward to this series. Hopefully it will touch on the sensitive area of prostate cancer.

    Being a gent of a certain age half my mates seem to succumbed and for some the consequences of surgery has been quite literally life destroying. And I suspect that much of this anguish and degraded quality of life has been quite unnecessary and ill-advised.

    I know that this is a complex and difficult issue but I am hoping you can provide a balanced basis for discussion in one of your instalments.

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    1. Chris O'Neill

      Victim of Tony Abbotts Great Big New Tax

      In reply to Peter Ormonde

      Prostate Cancer is one of the classic examples not mentioned above. One urologist said the tests are OK as long as the results are used appropriately. But that's the whole point, the diagnosis is not being used appropriately.

      For example, the success rate of surgery in making a difference to survival of men diagnosed with Prostate Cancer is so low (2%), that they would actually score a higher success rate (at least 4%) if they instead operated on men who don't yet have Prostate Cancer. Ironically…

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  6. Peter Keddie

    retired

    The series will be of great value provided we do not confuse issues in different countries with differing health systems and populations. A comment on fee for service v salaried rates of diagnosis and treatment will be valuable. I hope most GP here will be of the type Monica attends, with a better perspective on the issues than maybe exists in some other countries.

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  7. Mark Amey

    logged in via Facebook

    I'm waiting for the avalanche of comments from sufferers of 'over-diagnosis', but, I guess I'm one of them! I'd managed to skate through the first 48 years of my life with very few visits to GPs. This all changed when I had a small stroke, was admitted for three days, then discharged. Elevated blood sugar levels in hospital ( a normal reaction to neuronal injury) pushed me into a Glucose Tolerance Test.

    My parting words to the nurse were some thing like 'hope I don't see you again'. 'You will', was her reply, 'they'll keep sending you for these until you've got diabetes!!'

    In seriousness, I think there is a huge burden on GPs to not miss a diagnosis, for fear of being sued, which does happen, in this country. this leads to extensive testing, and screening, hence diagnosing conditions which may have no impact on health or longevity. I think the PSA test is an example of this.

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  8. Clifford Chapman

    Retired English Teacher

    Apropos of this, I read an article last year, that I think was written in 2007, and I'll look this up again to get the actual figures, but it stated directly that 'normal' blood pressure used to have the systolic figure as being 160 and that the changes stem solely from the pharmaceutical industries and are not medically based.

    I do recall it would mean that as recently as prior to 2000, a reading of 160 would not indicate a medical problem.

    Interestingly enough, if only in my opinion, two doctors I asked about this directly, only mentioned that crude, 100 plus your age number, that apparently used to be applied.

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  9. Coco Coco

    logged in via email @hotmail.com

    I am also looking forward to this series. There does however need to be balance, as there is undoubtedly a far greater problem with under diagnosis and under treatment.
    Some GP's take the time with patients to get the whole picture of their health, and have great diagnostic skills or at least some minimal level of interest or curiosity but I have to say my experience has been to the contrary. I have a number of experiences with GP's who frankly, under treat to the point of negligence.
    Example…

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  10. Dianna Arthur
    Dianna Arthur is a Friend of The Conversation.

    Environmentalist

    I believe that big-pharma has a lot to answer for. GP's are as susceptible to advertising as any of us. My old anti-depressants weren't really working as well as they used to and my GP prescribed the latest treatment which resulted in the following:

    Increased weight gain, migraines, joint aches, fluid retention, the worst effect however are the mood swings from sheer rage to blubbering depression.

    Surely my new medication should've been based on what was working in my old prescription rather than something with a completely different formula. My life has been utter hell these past months. There are posts on this site I don't even remember writing. And I have wanted to die because living like this is not a life.

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    1. Peter Ormonde

      Farmer

      In reply to Dianna Arthur

      Lots of guess work on this stuff Ms A... no one is really all that certain about which neurotransmitter to target... so a fair bit of personalised experimentation is involved.

      Walking is good. Walking with a dog is even better. Talking is also good - even this curious virtual chatting - provided it doesn't get all snakey and argumentative. Change - removing those things in our lives that sadden us - tearing ourselves up and moving somewhere we actually enjoy living.

      Pills can help a bit - like a safety net if we're lucky - but if we want to get airborne we must flap our wings yes? It's up to us.... grim and not so grim determination.

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    2. Dianna Arthur
      Dianna Arthur is a Friend of The Conversation.

      Environmentalist

      In reply to Peter Ormonde

      Plan to get a dog after moving to Tassie.

      Amazing that what is 'me', is really nothing more than a tiny portion of chemicals.

      Getting the balance of chemicals out by a fraction - all too easy, like breaking a mirror - never the same when we put it back. We do not know what we are playing with. Same with genetic engineering, nuclear and more. We take a little knowledge and think we know it all.

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    3. Ian Musgrave

      Senior lecturer in Pharmacology at University of Adelaide

      In reply to Dianna Arthur

      Dianna, you need to discuss the side effects of the new drug with your GP.

      "Surely my new medication should've been based on what was working in my old prescription"

      If your old chemicals weren't working as well as before, another version of them was going to work as well either. If you were on, for example, a tricyclic antidepressant, then just substituting another tricyclic antidepressant will not help as it would be subject to the same physiological mechanisms that caused the other tricyclic to not work as well.

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    1. Coco Coco

      logged in via email @hotmail.com

      In reply to Ian Musgrave

      Thank you for the references Ian. I realise that the underlying thrust of the political end of the over treatment debate is a strong desire to reduce health costs, so at the political/funding level, critiques about over treatment are manna from heaven, as they will be seized upon not by medical and legal philosophers and those most keen on patient rights to raise standards, no they will be exploited by bean counters to slash health programs. This is not to impunge the researchers, their motives or…

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  11. Ian Musgrave

    Senior lecturer in Pharmacology at University of Adelaide

    "Pre-hypertension – created as a new diagnostic category in 2003 – is highly controversial, with some senior figures rejecting it as a pseudo-syndrome designed to expand the market for drugs."

    The concept of prehypertension as been around since 1939 (see 3rd abstarcty below), and there is convincing evidence that people with blood pressures at the borderline of high blood pressure are at increased risk (twice the risk of lower BP levels) of developing cardiovascular disease. As well, the condition…

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    1. Peter Ormonde

      Farmer

      In reply to Ian Musgrave

      Raises an interesting question this Ian ... the magic bullet stragey that seems to pervade much of modern medicine.

      My mum who was a sprightly 80 or so at the time was identified as having excessive cholesterol in her blood. So her local GP put her on a constant diet of pills which at the time required a special authority from the PBS being rather expensive.

      Trouble is my mum - living alone - was having two eggs a day for breakfast, another for lunch, and often a fourth for dinner. No one even asked her what she ate.

      Should the taxpayer subsidise my mum's negligently eggy breakfasts?

      We stopped the endless consumption of eggs, took her off the pills and she is now 95... never sees a doctor and takes absolutely nothing - not even aspirin. And the cholesterol is fine.

      Just an anecdote - but I suspect this prescribing fetish is actually pretty common.

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    2. Ian Musgrave

      Senior lecturer in Pharmacology at University of Adelaide

      In reply to Peter Ormonde

      Your mothers egg consumption may not necessarily have been involved in the high cholesterol (if the pills worked, then they weren't).

      Appropriate prescribing is an important issue, and your mother's GP should have asked diet and lifestyle questions as part of the work-up on her condition (and perhaps did, but there was miscommunication, as I know with my 90 year old mum).

      Quality use of medicines involves not just making sure that the right drugs (if any) are prescribed for the right length of time, but also that there is effective doctor patient communication (in both directions, not just doctor to patient).

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    3. Peter Ormonde

      Farmer

      In reply to Ian Musgrave

      Oh yes Ian - no argument there - she's appalling with doctors - sycophantic and almost coquettish ... far more interested in chatting about them and their kiddies than she is about detailing her symptoms.

      Perhaps we need lessons in how to talk to doctors? Not as silly as one might think actually.

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  12. Andrew Wood

    Dr

    Here comes another anecdote............I was diagnosed, by colonoscopy, with asymptomatic bowel cancer at 45 yrs of age as a result of 'over diagnosis'. I'm disease free (2yrs on) and not cursing the potential harm caused by having a colonoscopy before 50.
    I would suggest that GP's are well aware of the issue of over-diagnosis and that the vast majority of them discuss pro's and cons before embarking on courses of treatment. Mine will refer me to a specialist if we consider it necessary. I have yet to find a medical practitioner who wants to over-diagnose me. I have also yet to find a GP who is driven by an obvious desire to prescribe any particular pharmaceutical.
    Could it be that my medical professionals are not even integrative.............just sensible?

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  13. Kate Rowan-Robinson
    Kate Rowan-Robinson is a Friend of The Conversation.

    Registered Nurse/Sexology Student

    I am really looking forward to this series. While healthcare professionals are driven by early diagnosis and treatment, it will be interesting to see what the side-effects of this will be.

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  14. Clifford Chapman

    Retired English Teacher

    As an addition to my earlier comment about blood pressure, although I can't find the exact quote I mentioned, on a site called 'Disabled World: towards tomorrow', an article: 'Blood Pressure 100 Plus Your Age', states: 'A former NASA astronaut and family doctor 'wonders if modern views on what is normal
    blood pressure arises from drug company involvement. In the 1970s, the target limit for initiating drug treatment was 160/95.''

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    1. Ian Musgrave

      Senior lecturer in Pharmacology at University of Adelaide

      In reply to Clifford Chapman

      This reflected the relative lack of effective high blood pressure treatment (atenolol was only approved in 1976, cutting out your sympathetic gangalia was effective but high risk) and the relative lack of epidemiology for risk at lower levels. It was clear from comparison with other cultures (eg Japan , with low CVD risk and whose elderly did not have BP rise with age) that there was an issue, but it wans't clear how much of an issue absent effective drugs.

      Now CVD has plummeted as a result of effective intervention.

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    2. Clifford Chapman

      Retired English Teacher

      In reply to Ian Musgrave

      Thank you for that information, and I'm not unmindful of the fact that improvements in medical care and awareness aren't relevant factors also in issues such as the one I've raised.

      The trouble is, though, that you can't help feeling at times with the pharmaceutical companies that benefit financially from health matters that there's no smoke without fire, as it were.

      Over here in W.A., for example, relatively recently, the media reported on what some high-ranking health employees had received from such companies. You can't help feeling these are really inducements by any other name and must have some affect on the recommendations of the professionals employed in the industry.

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    3. Clifford Chapman

      Retired English Teacher

      In reply to Ian Musgrave

      The site I originally mentioned is 'Yahoo Voices' and an article entitled 'The Best Natural Cures For High Blood Pressure' and was dated November 5th, 2006.

      The author categorically states: High blood pressure is classified as a systolic pressure of more than 140 and the diastolic pressure of more than 90. It's interesting to note that about 4 years ago, high blood pressure was classified as 160/95. The lowering of the standard has little to (do) with health risks, and a lot more to do with how much money goes into the FDA, and the entire pharmaceutical industry.'

      I have asked doctors whether this is true or not and, as yet, have not received a straight refutation.

      Of course, I am well aware that because that article states that, it doesn't follow it is factually correct, but at the very least, given the dates, it should be fairly easy to verify whether, prior to 2000, for example, doctors did generally base their responses to blood pressure readings on those higher figures.

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    4. Ian Musgrave

      Senior lecturer in Pharmacology at University of Adelaide

      In reply to Clifford Chapman

      The author is categorically incorrect. I did my Masters on stress-induced hypertension in the early 80's (awarded 1986), at that time 140/90 was the limit beyond which we called things high blood pressure, and it was definitely in textbooks from the 70's. A review (not online) I have to hand from 1976 treats 140/95 as the cut-off. This paper from 1985 (warning big PDF) also treats 140/90 as the cut-off
      http://hyper.ahajournals.org/content/7/5/681.full.pdf

      Of course there was, and still is, a grading system, over 140/90 was mild hypertension, 160/95 was severe hypertension and when SBP went over 210 urgent action was required (rapid increases to 210 mmBP was fulminant hypertension)

      Despite being nost a neuropharmacologist now, I still am a member of the High Blood Pressure Research Council of Australia

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    5. Clifford Chapman

      Retired English Teacher

      In reply to Ian Musgrave

      I am trying to access that site in order to see if the author received comments and feedback soon after it appeared.

      There are, though, three issues he/she raises.

      1. High blood pressure figures used to be higher than what they are now,
      2. Their lowering has little to do with health risks,
      3. The reasons for the new standards are primarily financial.

      Is he/she categorically wrong on all three?

      I have in front of me a blood pressure box for a modern Lifeline unit I own that lists 5 Stages, with Normal Systolic ranging from 90-119 and Normal Diastolic 50-79.

      Your 140/90 reads on this unit as Stage1 Hypertension.

      Is the devil in the detail here, so that the gist of that original author is right?

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    6. Clifford Chapman

      Retired English Teacher

      In reply to Ian Musgrave

      I'm not disputing your research.

      There was also that NASA astronaut in my post, the one to which you first replied, who was a doctor and who himself raised the issue of the drug companies' involvement in this area of health.

      Are those companies really innocents in all of this?

      What about the figures I gave from my Lifeline unit? Even if that original author is 'categorically wrong', isn't it more than coincidental that the 'normal' readings, as on this unit of mine, is now Systolic 90-119 over Diastolic 80-89?

      It lists Systolic 120-139 over Diastolic 80-89 as being 'Prehypertension'. Isn't 'normal' prehypertension as well?

      Who or what is driving and setting these agendas?

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    7. Clifford Chapman

      Retired English Teacher

      In reply to Ian Musgrave

      I've looked at those references and agree that they support a need for people to monitor and assess regularly their blood pressure.

      However, I did notice that companies and businesses were also involved in some of the relevant research and consultative processes.

      I have to say, though, that in my reading of those references that the high blood pressure statistics are not, quite correctly, separated from the other important health factors such as fitness, smoking, diabetes, obesity, etc.

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    8. Ian Musgrave

      Senior lecturer in Pharmacology at University of Adelaide

      In reply to Clifford Chapman

      With due respect to any former astronauts reading this, but there was a huge amount of research in the late 1970 's through to the 90's on the natural history of hypertension and the effects of treating it (then again, the issue was only covered in the top medical journals like New England Journal of Medicine, Lancet and JAMA so it could have been easily missed [sarcasm]). *

      Anyone missing this research and debate has no right to comment on blood pressure treatment (or who was incapable of reading…

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    9. Clifford Chapman

      Retired English Teacher

      In reply to Ian Musgrave

      Yes, I do agree, though causal factors would surely be where the main focus should be directed?

      The purchasing of the drugs that addresses the hypertension problem, is only an alleviative measure.

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  15. Sue Ieraci

    Public hospital clinician

    This is an interesting article, if understood to be from the point of view of a non-clinician. Ethical and philosophical analyses of medical practice are important.

    When policy is implemented, however, one cannot consider only philosophical questions, but what our community expects and tolerates.

    I am a relative "moderate" when it comes to testing and diagnosis - I only want to modify something if that will improve the person's quality of life. However, the difference between myself and the author is that I am held accountable for the advice I give and treatment I give or don't give. I'm not worried about litigation - much more about the welfare of the person who seeks my advice. Again, this is not "integrative" - just rational.

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  16. Emilia Kate Terzon

    logged in via Facebook

    The sexual health industry is another industry in Australia that needs investigation: the medicalisation of women's sexual "dysfunctions" and the like. Excited for this series!

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  17. Margo Saunders

    Public Health Policy Researcher

    Readers seeking a thoughtful approach to these issues will appreciate this article, which appears in the current issue of the NEJM: 'There Is More to Life Than Death' by Pamela Hartzband, M.D., and Jerome Groopman, M.D. (N Engl J Med 2012; 367:987-989 September 13, 2012)

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  18. Georjean Parrish

    logged in via Twitter

    I would love to see some conversation on the diagnosis of kidney cancer when it is only defined in medical records as "RENAL MASS" and doctors are removing kidneys at an alarming rate. This article is interesting from a urologist http://www.lvrj.com/health/50765322.html

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  19. j jonik

    none

    Also frightening is the widespread problem of UnderDiagnosis, or perhaps intentional MisDiagnosis.
    This is most prevalent, globally, in the matter of so-called "smoking-related disease" or "tobacco-related disease"....apparent attempts to blame the victims and to blame a virtually un-studied public domain natural plant for the effects of one of the most multi-adulterated products ever made. Try, in vain, to find studies of "tobacco" or "tobacco smoke", that qualify the terms for being adulterated…

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  20. Elizabeth Hart

    Independent Vaccine Investigator

    It’s good to see the ‘epidemic of over-diagnosis’ being discussed on The Conversation.
    I suggest another series could be done on the 'epidemic of over-vaccination’, examining the burgeoning National Immunisation Program Schedule: http://www.immunise.health.gov.au/internet/immunise/publishing.nsf/Content/nips2 Precisely how much objective consultation with the community is undertaken before new vaccines are added to the schedule? Zip, as far as I am aware.
    I'm not 'anti-vaccination', rather…

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