SMART Work Design: Accelerating the Diagnosis of Rare Diseases in the Western Australian Undiagnosed Diseases Program.

The accurate and efficient diagnosis of rare diseases, many of which include congenital anomalies, depends largely on the specialists who diagnose them - including their ability to work alongside specialists from other fields and to take full advantage of cutting-edge precision medicine technologies and precision public health approaches. However, highly specialized clinicians operating within a historically-siloed healthcare system is antithetical to the multi-disciplinary, collaborative, and creative approach that facilitates the diagnosis of rare diseases. The Western Australian Undiagnosed Diseases Program (UDP-WA) successfully re-designed the work of the involved clinicians to facilitate teamworking across silos. To understand the effectiveness of the Western Australian program, we draw on a SMART work design perspective (i.e., work that involves Stimulation, Mastery, Agency, Relations, and Tolerable demands). We propose that the redesign was successful in part because it improved crucial psychosocial work characteristics that are less prevalent in the broader work system, as identified in the SMART model. Based on the effectiveness of UDP-WA and its SMART design, we provide a framework that clinicians, healthcare managers, and policymakers can consider when they re-design work so that they can create SMART jobs within healthcare.

Diagnosing rare diseases: A sociotechnical approach to the design of complex work systems.

How do complex healthcare systems that are organised into distinct speciality areas achieve effective patient care transitions when patients present with a rare constellation of symptoms that affect multiple body systems? How do these patients challenge existing ways of organising tasks, clinical activities, and interdependent responsibilities? The current study applies a sociotechnical systems perspective to understand how these complex work design and care-related challenges were resolved by the Western Australian Undiagnosed Diseases Program. We conducted a two-year longitudinal, qualitative study of this program, conceived to improve the diagnosis and management of patients with rare, multi-system disorders by piloting a re-design of the local system of diagnostic work. Specifically, we (1) compared the configuration and effectiveness of the old system and the re-designed system; and (2) analysed the process of system re-design (i.e., the design, implementation, and operation of the program) in order to understand the factors that contributed to - or inhibited - its success. We discuss the theoretical and practical implications of our findings for effectively re-designing complex, trans-organisational work systems.