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Case Study

Uncovering the active ingredients in the WA Undiagnosed Diseases Program

Rare and complex diseases creates a disproportionately large impact on the Australian public health system, and presents a significant challenge to clinicians trying to find answers for these patients.

The Centre for Transformative Work Design is currently partnered with Genetic Services WA and the Office of Population Health Genomics (OPHG) to study the Western Australian Undiagnosed Diseases Program (UDP-WA), an interdisciplinary ‘expert panel’ which reviews the cases of chronically undiagnosed patients. The aim of the current project is to understand the cognitive, motivational, and social-psychological factors that contribute to – or inhibit – the success and sustainability of the program.

The project is ongoing and uses a multimodal data collection approach including:

  • Interviews with the UDP-WA expert clinicians
  • Short written surveys
  • Systematic observation of the monthly expert panel meetings

The ultimate goal of the project is to develop evidence-based recommendations on how to further enhance and sustain the success of the UDP-WA, specifically by improving clinician engagement and communication in the expert panel meetings. These recommendations will be developed in consultation with the OPHG and UDP-WA management team, and will include follow-up evaluations.

Outcomes:

  • Developed a comprehensive, multi-level framework of the UDP-WA that describes the factors contributing to the current program’s success.
  • Distribution of these findings into the wider community has provided significant support for continued globalisation and sustainability of UDPs internationally.

Further reading

Recently, our UDP research team, Dr Georgia Hay, Dr Florian Klonek and Professor Sharon Parker, published an academic article detailing the factors that contribute to – or inhibited –the success of the WA Undiagnosed Diseases Program.