Effective Healthcare Delivery in Rare Diseases: Evaluating Models of Care for Systemic Vasculitis Across UK and International Healthcare Settings

Patients with rare diseases are commonly marginalised within health care systems. For example, sufferers of systemic vasculitis – a devastating but treatable multi-organ illness – frequently experience delays in diagnosis, uncoordinated care and inconsistent access to relevant expertise. In practice, numerous models of vasculitis health care delivery are adopted in the UK and overseas, but no studies have actually characterised any of these models or evaluated their effectiveness by relating them to patient outcomes.

This PhD project presents a novel and exciting opportunity to compare and contrast vasculitis service delivery across a range of national and international health care settings. The student will apply a range of quantitative and qualitative methodologies, including hospital registry data linkage and healthcare professional/patient interviews. The successful applicant will join a vibrant multi-disciplinary team within the Aberdeen Centre for Arthritis & Musculoskeletal Health (www.abdn.ac.uk/acamh), working alongside our other PhD students to develop increasingly vital skills in health services research. It is anticipated that this will provide an evidence base which will not only facilitate the development of an effective service delivery model for vasculitis, but will also inform the care of rare diseases more generally.