Tag: Impact

“How patients at different stages of the steroid weaning process helped to shape and design my research”

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In conversation with: Dr Katharine Lazarus, Diabetes and Endocrine Registrar and Clinical Research Fellow, working within the Section of Endocrinology and Investigative Medicine, Department of Metabolism, Digestion and Reproduction, Imperial College London

What is your research project about and what stage are you at?

Steroid tablets, such as prednisolone are widely used to treat conditions such as asthma and arthritis. One in six people take steroids at any one time and one in 50 adults (approximately 1 million in the UK) take steroids for a prolonged period. 

Case study #16: Frontiers in Cystinuria Research – Learning from patient experience to inform precision medicine research

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Dr Toby Athersuch, Lecturer, Phenome Centre

‘Frontiers in Cystinuria Research’ was an event held last October at Imperial College London. It involved people affected by cystinuria in discussions with expert medical professionals and academic researchers active in this area. The aim of the event was to capture some of these rich patient experiences to inform future precision medicine research, while simultaneously providing a forum for patients to share their insight. We feel that these types of event are important enablers of patient-directed research development, particularly relevant in the context of rare metabolic diseases, where patient input and advocacy is often underrepresented.

Case study #14: Public involvement in research that is less “public facing” – PPI and Mathematical Modelling

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By Dale Weston, Research Fellow, NIHR Health Protection Research Unit (Modelling Methodology) (HPRU(MM))

What did you do?

Our project was a Patient and Public Involvement group with 8 members of the public, attending a half-day workshop. First, they provided input on a systematic literature review drafted by a member of the research team entitled “Human Behaviour and Infectious Disease Modelling: A Scoping Review of the Literature and Recommendations for the Future”. The members of the public were sent the draft systematic review to read ahead of the workshop together with a useful guide to reading a scientific paper.