Today, we are launching a new series that investigates how to reduce overdiagnosis and overtreatment in Australia and globally.
Below, Professor Stacy Carter, director of the Australian Centre for Health Engagement, Evidence and Values at the University of Wollongong, explains why overdiagnosis matters, including because of concerns about quality and safety of healthcare, lost opportunity, inequity and squandering precious resources.
Stacy Carter writes:
Do you care about the quality and safety of our healthcare system? Do news stories about healthcare breakthroughs ever make you raise an eyebrow? Have you ever wondered whether to sign up for a test or a treatment?
Lean in: our new blog, Too Much of A Good Thing, is for you.
At Wiser Healthcare, we are part of a growing international movement of organisations and people concerned about a counterintuitive health problem. Our research aims to understand this problem, and identify proven ways to fix it.
Based in Australia, we are funded competitively through the Australian National Health and Medical Research Council. We are academic and clinical researchers in public health, medicine and allied health, psychology, social science and ethics. We are based at The University of Sydney, Monash University, Bond University and Wollongong University.
So what’s the problem?
Increasingly in health care systems, we don’t know when enough is enough.
That sounds wrong, doesn’t it?
News stories are full of urgent health issues not being addressed, exciting breakthrough treatments that will transform people’s lives, and overloaded health services not providing sufficient care.
The implication is that if we just recognised the seriousness of ill health, invested in ground-breaking technology, and did more, everything would be OK.
What if we told you that this version of events misses an increasingly important issue: that many of us are getting too much healthcare, and this makes things worse instead of better.
Health systems have developed some bad habits. Instead of focusing resources on helping people who are suffering and clearly need care, health systems are:
- Testing healthy people, just in case something might be wrong with them
- Using increasingly sensitive testing technology, so that the slightest change, however inconsequential, will be detected
- Expanding the definition of diseases so that more and more people are diagnosed – often with no obvious benefit to them
- Prescribing drugs to minimise an already small risk of future disease, when those drugs can cause significant, immediate side effects
- Offering high-tech treatments before we know that they are safe and effective, and
- Favouring complex care when simpler approaches would do just as good a job.
Notice that this is not about negligent rogue doctors, or mistakes, or incompetence.
It’s about health services habitually offering interventions that are unnecessary, or that are likely to do more harm than good. And these interventions don’t just cause harm (as serious as that is).
They also use up healthcare capacity that could be better spent on more effective care for people who really need it.
So overdiagnosis is also about lost opportunity, inequity and squandering precious resources.
How can being diagnosed cause me harm?
Isn’t it always better to know if something’s wrong, no matter how minor? Isn’t disease always better out than in? Shouldn’t we all get checked regularly, and treat anything that might possibly be a risk to our future health? Isn’t it better to be safe than sorry?
Diseases don’t always get worse or cause symptoms: they can stay the same for decades, or go away by themselves.
Being at risk for a condition does not mean that you’ll definitely develop that condition in future.
And most treatments come with side effects, sometimes very serious side effects. This means that being diagnosed and treated can sometimes cause you more harm than good.
Here’s an example: papillary cancer of the thyroid, the gland that sits in front of your Adam’s apple. There has been a huge recent increase in thyroid cancer diagnoses: 10-fold in some countries. This is mostly due to tiny cancers (less than 2mm) being found via imaging tests like ultrasound or CT scans, often ‘incidentally’ while testing for something else.
There is good evidence that more than 70 percent of these tiny cancers are harmless (some disappear on their own), and that regular monitoring can safely identify those few that need treatment later on.
Despite this, many people are told they have life-threatening cancer (a traumatic experience), and pushed into immediate treatment.
Treatment includes surgery (risking infection, voice problems due to nerve damage, and calcium deficiency due to damage to other glands); some people have to take thyroid hormone tablets for the rest of their lives. These are downsides most people would be willing to tolerate to avoid cancer death.
But in fact most people treated for low-risk micro-papillary thyroid cancer had zero risk of dying from the condition, or even developing symptoms.
They were harmed by unnecessary diagnosis, and so would have been better off if they had not been diagnosed.
Why this series?
In this series, we will highlight research on overdiagnosis, and discuss what it means for the future of healthcare.
We are investigating the extent of overdiagnosis (and how to measure it—a challenge in itself), the causes of overdiagnosis, how overdiagnosis is understood by patients and clinicians, and potential solutions.
We have shown, for example, that:
- About 41 percent of Australian men who have been diagnosed with prostate cancer have been overdiagnosed – which means any treatment those men received was unnecessary treatment;
- If low-risk conditions are given a more ‘medical-sounding’ name, people are more likely to want invasive treatment like surgery (even if this might not be necessary), feel more anxious about the condition and perceive it to be more severe;
- Between a quarter and a third of people who go to a doctor or hospital with uncomplicated low back pain are referred for an X-ray, ultrasound, MRI, CT scan or other imaging, even though evidence shows this won’t help.
Members of Wiser Healthcare (there are almost 90 of us), with our national and international collaborators, are passionate about preventing overdiagnosis. So much so that we spearheaded a National Action Plan, underpinned by a call to action signed by leading Australian organisations like the Consumers Health Forum of Australia, the professional Colleges and Associations of General Practitioners, Physicians, Radiologists, Surgeons, Rheumatologists and Physiotherapists, and Cancer Council Australia.
We are hosting an international conference on Preventing Overdiagnosis in December 2019 at the University of Sydney, co-sponsored by the World Health Organisation, which includes a free pre-conference ‘Beginners Guide to Overdiagnosis’ seminar you can attend if you’d like to hear more.
Understanding and resisting overdiagnosis is one of the great health puzzles of our time, and an urgent priority.
• Professor Stacy Carter is director of the Australian Centre for Health Engagement, Evidence and Values at the University of Wollongong
Acknowledgements: Thanks to Chris Maher, Kirsten McCaffery, Ray Moynihan and Rachelle Buchbinder for their contributions.
The series investigates how to reduce overdiagnosis and overtreatment in Australia and globally. The articles are also available for republication by public interest organisations, upon request.