Our team is working on methods to improve healthcare through our deliberative democracy research to include shared decision-making, consumer involvement in research.

Aimed at both patients and professionals, the book Testing Treatments builds a lively and thought provoking argument for better, more reliable, more relevant research, with unbiased or ‘fair’ trials, and explains how patients can work with doctors to achieve this vital goal.

In this section, you can download both editions of the book as a PDF (see below), find out more about what’s new in the second edition, read reviews of it and access translations.

Find out more at www.testingtreatments.org.

Reversing the harms of overdiagnosis — “too much medicine” — is becoming a health care priority in Australia and international, prompting the formation of a new alliance of clinical, consumer, research and public organisations to tackle the problem – That alliance is the Wiser Healthcare research collaboration on overdiagnosis.

Assistant Professor Ray Moynihan, a senior research fellow at the Institute, and colleagues, wrote that too many Australians were “receiving diagnoses unlikely to benefit them”.

“In 2016, for example, researchers estimated that over 500 000 people may have been overdiagnosed with thyroid cancer across 12 nations over two decades,” Moynihan and colleagues wrote. 

New reform aims to prevent overdiagnosis and stop defining healthy people as diseased. Overdiagnosis can happen when the definitions of diseases are broadened so much that people with very mild problems, or people at very low risk of future illness, are classified as being sick, given a label, and then offered treatments which may do more harm than good.

Examples of the problem of inappropriately expanded definitions of disease include:

  • The controversial definition of Chronic Kidney Disease, which labels many older people who will never experience related symptoms, and was launched at a meeting sponsored by a drug company
  • A vastly expanded definition of Gestational Diabetes, which may now label up to one in five pregnant women, despite a lack of good evidence that the newly labelled women or their babies will gain meaningful benefits that outweigh potential harms
  • A proposal to expand the definition of High Blood Pressure, which would label one in every two adults in the US, but has been rejected by a family doctor organisation and others over concerns it may cause more harm than good to many people
  • The creation of “pre-diseases” such as pre-osteoporosis, or pre-diabetes, which classify healthy people who are essentially “at risk of being at risk”.

"Winding back unnecessary tests and treatments, unhelpful labels and diagnoses won’t only benefit those who directly avoid harm, it can also help us create a more sustainable future." Dr Fiona Godlee, Editor-in Chief, BMJ

Overuse of low-value healthcare and underuse of effective healthcare are deeply entrenched. Both represent suboptimal care. Their drivers include: cognitive biases, poor communication, knowledge uncertainty, and structural and financial elements of health systems. Health systems are now striving to provide appropriate care, which can be described as care that is patient-centred and where the benefits and harms are weighed up and informed by evidence.

A key strategy to achieving this is shared decision making - a process which enables patients to make evidence-informed health decisions that are congruent with their values and preferences, after collaborative deliberation with their clinician. Genuine patient involvement in making informed health decisions is a fundamental right. As well as benefiting individual patients and clinicians, shared decision making holds promise for protecting and improving the health of populations and contributing to health system sustainability by reducing the overuse of ineffective tests and treatments and increasing the uptake of effective ones. It is a key component of most healthcare reform models and policies to emerge in recent years. Strategies that can be used to facilitate shared decision making include the use of patient decision aids, clinician training, and the integration of shared decision making tools into evidence syntheses such as guidelines.

As medical technology and public health developments enable us to live longer, the proportions of those aged 70 years and above is growing, leading to a swelling and unsustainable demand for health services to manage the increased prevalence of irreversible age-related chronic illnesses. Unfortunately, sometimes aggressive treatments are administered to older people which will cause more suffering than benefit and prolong dying rather than improve the quality end of life. Our research program on end-of-life aims to create awareness among health professionals in Australia and overseas of the extent of non-beneficial treatments administered to older patients with multiple chronic conditions who are in their last months of life.

“No-one is allowed to die anymore … it has almost become a dirty word” – doctor

Our community engagement team has been working on methods to improve healthcare through our deliberative democracy research.

Our team host community juries and consultations to help inform decisions and service planning and recently hosted the community jury on gestational diabetes, at Bond University on the Gold Coast.

Patients want medical professionals to be straight forward when giving them their prognosis, especially when it comes to end of life.

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An Australian-first study led by Bond University on the Gold Coast has found that at least 41 per cent of prostate cancers detected by commonly performed screening tests are over-diagnosed.

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