Treating patients with an illness that may not exist- using Lyme or Lyme-like illness in Australia as a case study for developing patient centric communication strategies and policy guidelines for interacting with complex and controversial illnesses

Author: James Ansell – The Australian National University, Australia

Lyme disease is a complex, debilitating tick-borne illness with symptoms ranging from fever and malaise to polyneuropathy and encephalomyelitis. Lyme is surrounded by much controversy, particularly Australia. There are an increasing number of extremely ill Australians who believe they have Lyme or a Lyme-like illness. However Government agencies and the medical community firmly maintain that Lyme does not exist in Australia.

This stark division has led to an increasing breakdown of relations between key stakeholder groups. In 2016 this culminated in an emotionally charged Australian Senate Committee. The Inquiry concluded that the official response to these unwell people had been inadequate, recommending a patient-centred, multi-disciplinary treatment approach be adopted by official agencies and the medical community. The Inquiry urgently recommended funding be made available for research and in 2017 the Australian National Health and Medical Research Council allocated $3 million to a targeted call for research into Lyme-like illness in Australia.

This issue raises an important question for science communication in the medical landscape- how can we best communicate the science of complex, controversial and constantly changing diseases such ill people remain engaged with the medical community and treatments. Particularly when stakeholders are so strongly divided. More broadly, what policies can be developed to guide medical practitioners, researchers and government agencies in responding in an appropriate and constructive manner that minimises harm if a complex and controversial diseases emerges, or is perceived to emerge, in a new area.

This research proposes to use Lyme or Lyme-like illness in Australia as a case study to develop best communication practises and policy in this field. Firstly by looking at the historical situation to review what occurred and what went wrong. And secondly by examining the effects of what is developed or delivered over coming years following the Senate Inquiry and NHMRC funding.

The author has not yet submitted a copy of the full paper.

Presentation type: Idea in progress
Theme: Society
Area of interest: Investigating science communication practices