In this blog series we will be featuring our award winners and highly commended recipients from the Faculty’s ‘Outstanding Contribution to PPIE’ awards. The awards showcase inspirational and outstanding commitment to PPIE that has made a positive difference to our community and highlights the amazing events, activities, people and groups from across the Faculty.  

Our latest blog in this series features Edith Brown, a long-term patient partner who has worked with the Raynaud’s and Scleroderma Research Group on several studies and research projects. Edith was a winner in the individual (public contributor) category at the 2024 PPIE Awards. 

Edith’s dedication and expertise have significantly shaped research into Raynaud’s phenomenon and scleroderma. Edith has played a pivotal role in numerous studies led by the Raynaud’s and Scleroderma Research Group, contributing as a member of user groups, trial steering committees, and as a patient partner co-creating research outcomes. 

Edith has worked with the Raynaud’s and Scleroderma Research Group on several studies as a member of user groups, as a member of trial steering committees, and more recently later as a patient partner helping to shape research projects and co-create outcomes.  

Nationally and internationally, Edith is recognized for her advocacy and research contributions. She represents Scleroderma and Raynaud’s UK and serves as a patient research partner with OMERACT (Outcome Measures in Rheumatology). This partnership is dedicated to improving health outcomes for patients suffering with painful finger lesions which severely impact quality of life. 

Edith’s influence is reflected in her scholarly contributions, having co-authored six peer-reviewed publications. Her presentations, including a talk at OMERACT 2023 in Colorado Springs, have been praised for bringing the patient experience to life and highlighting practical challenges to clinicians, researchers, and the public. 

Her international reach also includes advisory work with pharmaceutical company Boehringer Ingelheim, where she contributed to the design and implementation of the SENSCIS trial—the largest clinical trial in scleroderma to date. 

At the University, Edith’s contributions have also been outstanding. She has provided insightful feedback on lay summaries for successful grant applications to Versus Arthritis and the NIHR and has helped craft patient-facing documents with meticulous attention to detail. Her commitment is unwavering, and she serves as a role model for fellow contributors. Edith’s unique outlook and commitment have been invaluable in shaping different projects and moving research forward to benefit other patients.    

Find out more: 

• OMERACT Patient Research Partners Network 

• OMERACT Scleroderma Vascular Disease Working Group 

To find out more about PPIE: watch our short film, sign up to the monthly Public Engagement Digest, visit the PPIE blog, or contact srbmh@manchester.ac.uk. 

To read more about other PPIE Award winners visit here. 

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