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2 What’s in a name? Defining and labelling disease and its role in reducing overdiagnosis and overtreatment
  1. Kirsten McCaffery1,
  2. Stacy Carter2,
  3. Rae Thomas3,
  4. Chris Degeling2,
  5. Brooke Nickel1,
  6. Tessa Copp1,
  7. Ray Moynihan3,
  8. Jenny Doust3,
  9. Paul Glasziou3,
  10. Alex Barratt1,
  11. Jesse Jansen1
  1. 1University of Sydney, Sydney, Australia
  2. 2University of Wollongong, Wollongong, Australia
  3. 3Bond University, Gold Coast, Australia

Abstract

Changing disease or health risk definitions and labels where there is a case for no or little net benefit and significant harm, has the potential to affect millions of people worldwide. It appears, on the surface, to be a comparatively sustainable intervention to mitigate overdiagnosis and overtreatment, requiring only a one-off policy change. In practice however, changing disease definitions is an intensely complex, personal and political process requiring buy-in from clinical groups, patients and citizens.

This symposium examines how changing disease/health risk definitions and labels might mitigate overdiagnosis and overtreatment. Taking a multidisciplinary perspective we consider how Psychology, Epidemiology, Deliberative engagement, Bioethics and History and Philosophy of science can contribute to our understanding of the impact of disease/risk definitions and labels on citizens, the health system and society in general. We identify possible solutions for this growing problem, including examining how this might be implemented by decision-makers responsible for defining conditions.

We will have a series of brief 5 minute presentations followed by general discussion to collectively identify and further develop strategies to achieve change where it is warranted.

Program of speakers (45 minutes)

  1. Introduction – Professor Kirsten McCaffery, University of Sydney.

  2. The Consumer’s view – TBC

The problem

  1. The impacts of names on the named - a historical and philosophical perspective on disease definitions and labels – Dr Chris Degeling, University of Wollongong.

  2. Using Psychological methods to understand the impact of disease or disease risk labels and the effect of changing labels:

  • Evidence from cancer labelling studies – Dr Brooke Nickel, University of Sydney

  • Evidence from non-cancer labelling studies – Tessa Copp, University of Sydney

Possible solutions

  1. Engaging patients and public about the definition of conditions– Professor Stacy Carter, University of Wollongong.

  2. Re-labelling Gestational Diabetes: what do consumers want? A/Prof Rae Thomas, University of Bond.

  3. Defining the thresholds and boundaries for disease through expert committees. A proposed model for reform – Dr Ray Moynihan, Bond University.

  4. Changing practice in setting disease definitions through the Guidelines International Network – Professors Jenny Doust/Paul Glasziou, Bond University.

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