Why consumers must help remedy overdiagnosis

Jan Donovan

The risks and costs of overdiagnosis pose an important and complex issue for health consumers in Australia and many other countries.  An international conference on Preventing Overdiagnosis held in Sydney recently shone light on the varied issues raised by overdiagnosis that demand greater scrutiny by, and involvement with, consumers.

At the conference, Anna Stavdal, President-elect of the World Health Organisation of Family Doctors, defined overdiagnosis as making people patients unnecessarily, by identifying problems that may not cause harm.

The Preventing Overdiagnosis International Conference brought together leading Australian and international researchers, academics, clinicians, consumers, health policy makers and members of the public from all over the world to present their research on all aspects of overdiagnosis. 

Laragh Gollogly, Director of Strategy, Policy and Information at the World Health Organisation, welcomed delegates with the following message: “Overdiagnosis is an important issue as more countries move to universal health care. One hundred and ninety-four Ministries of Health face the problem. Those in poor countries moving towards universal access are now ‘at risk’ of overdiagnosis.”

Barry Kramer of the United States noted that overdiagnosis was a biological challenge and a clinical dilemma. Screening beyond age 85 was common in the US. He proposed four elements as the way forward: education about the existence of overdiagnosis; changing terminology about disease as language can be ambiguous and confusing for consumers; more emphasis on primary prevention and individual level research was needed.  

The widespread consequences of overdiagnosis were borne out by presentations which ranged across issues including commercial drivers of overdiagnosis, genomics, potential hazards of routine breast screening, prostate surgery and musculoskeletal conditions.

The clear message from the conference is that overdiagnosis presents major implications for consumers, health professionals, Australia’s health system and health policy. For consumers, complexity in relation to diagnosis highlights the need to be engaged in our health care. We need to be well informed and able to act on reliable evidenced-based information about the risks or harms of a diagnosis and suggested treatments in order to make careful, considered decisions. This was the intent of the workshop on communicating about Choosing Wisely for patients and the public and the need to consider equity.

Another development which is aimed to support appropriate diagnoses is the Federal Government’s Medicare Benefits Scheme Review. This is considering how services can be better aligned with contemporary clinical evidence and practice and improve health outcomes for patients. 

The overdiagnosis issue is challenging for many consumers and we need to continue to work in partnership with researchers, academics, health professionals and public policy-makers to ensure that our health system continues to offer the safest quality care. 

For clinicians and health professionals, changing to a consumer-centred culture will require ongoing education and training in listening and communication skills to enable shared decision-making. This should not be left to chance but needs to be a specific component of all health professional education and training. 

Both consumers and health professionals should be assisted by co-designed decision-support materials to better enable shared decision making. For researchers, hearing and understanding latest overdiagnosis research and why it matters requires continuing engagement with consumers and the community.

Ongoing research in health literacy will assist with how best to communicate about overdiagnosis research findings with both consumers and the community. This communications research would be a significant contribution to public education about health care and may assist with future research priorities. 

For policy-makers, understanding the implications of overdiagnosis for policy and designing and implementing policies to address overdiagnosis will require collaboration, partnerships, consultation and new ways of working with all key stakeholders.

To learn more, see the Preventing Overdiagnosis website or view the keynote presentations from the 2019 International Conference in Sydney.

Jan Donovan is a director on the board of the Consumers Health Forum of Australia. She attended the Preventing Overdiagnosis International Conference in December.