"Solving the Unsolvable”:
Uncovering the Active Ingredients in the
WA Undiagnosed Diseases Program
Approximately 350 million people worldwide are affected by a rare disease, 2 million of whom live in Australia. The rare and complex nature of these diseases creates a disproportionately large impact on the 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 Western Australian Undiagnosed Diseases Program (UDP-WA) is part of a global movement to meet this urgent patient need. The UDP-WA pools the clinical expertise and decision-making skills of interdisciplinary clinicians from across WA and utilises cutting-edge technology – and it has achieved unprecedented success.
The aim of this research project is to analyse the individual, team, organisational, and national-level factors that contribute to the success of the UDP-WA, with a vision to enhance the multi-level systems and protocols that will support the long-term integration of interdisciplinary clinical expertise within the program.
Our team would like to understand the cognitive, motivational, and social-psychological factors that contribute to – or inhibit – the success and sustainability of the program.
Data collection is ongoing and includes interviews with the UDP-WA expert clinicians, short written surveys, and 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.
Upon completion, the insights garnered through this project will be translated to other interdisciplinary settings in the healthcare sector and beyond.
The proposed immediate outcome of the project is a comprehensive, multi-level framework of the UDP-WA that describes the factors that contribute to the current program’s success.
Dissemination of these findings will provide significant support for the further globalisation and sustainability of UDPs internationally.
Gareth Baynam (Genetic Services WA);
Stephanie Broley (Genetic Services WA);
Alicia Bauskis (Department of Health Office of Population Health Genomics);
Hugh Dawkins (Department of Health Office of Population Health Genomics)
Klonek, F.E., Meinecke, A., Hay, G., & Parker, S. (2020). Capturing team dynamics in the wild: The communication analysis tool. Small Group Research, 51(3), 303-341. doi: 10.1177/1046496420904126.
Hay, G. J., Klonek, F. E., & Parker, S. K. (2020). Diagnosing rare diseases: A sociotechnical approach to the design of complex work systems. Applied Ergonomics, 86, 103095. doi: 10.1016/j.apergo.2020.103095.
Hay G.J., Klonek F.E., Thomas C.S., Bauskis, A., Baynam, G. & Parker S.K. (2020). SMART Work Design: Accelerating the Diagnosis of Rare Diseases in the Western Australian Undiagnosed Diseases Program. Frontiers in Pediatrics, 8, 582. doi: 10.3389/fped.2020.00582