Improving healthcare delivery for patients with rare rheumatic diseases

Disease - Vasculitis

Lead applicant - Dr Rosemary Hollick

Organisation - University of Aberdeen

Type of grant - Health Services Research

Status of grant - Active

Amount of the original award - £309,166.38

Start date - 01 September 2019

Reference - 22088

Public Summary

What are the aims of this research?

Systemic vasculitis is a disease concerned with the inflammation of blood vessels. This study aims to understand which elements of healthcare delivery are associated with important health outcomes for patients suffering with vasculitis, and from this help design better health services for patients.

Why is this research important?

Patients living with rare rheumatic diseases such as vasculitis report feeling lost within a healthcare system not designed for treating those with complex conditions. Preliminary data from this group indicates that there are clinically important differences in service and outcomes between different centres. Therefore, it is important to identify these differences, and improve the service so patients all receive equal access to effective treatment and support.

The researchers will tackle this problem by comparing health outcomes of patients in Scotland with the service they have received. In addition, the group will conduct interviews of patients living with systemic vasculitis across the UK to create a new, freely available online resource for patients and families.

How will the findings benefit people with arthritis?

The researchers anticipate that this project will deliver a resource which has video, audio and written examples of patient experiences with systemic vasculitis. This resource will be freely available to patients, staff and families, and will be found on This website already has sections for other conditions, detailing patient experience. Feedback on this website reports that hearing from others who suffer from the same condition has made patients feel less alone.

The researchers also hope that this study will generate a set of recommendations which will be shared with their collaborators in the UK and Europe to hopefully inform decisions on how to improve healthcare service for patients with rare diseases.