‘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.
By Lidia Luna Puerta (@L_Luna_P)
Over the last 20 years, Singapore has become a medical research hub with global reach. The current focus is placed on translational research to close the gap between basic clinical research and patient care. Despite the growing worldwide adoption of public involvement in research, the role of Singaporeans in research is still limited.
I am a third year PhD Candidate at the Lee Kong Chian School of Medicine, Nanyang Technological University (NTU) in Singapore, exploring the potential for public involvement (PPI) in research in Singapore. Co-supervised by Professor Helen Ward, Director of the Patient Experience Research Centre (PERC), I have been working with PERC to learn from their wide experience in building capacity for public involvement amongst researchers and members of the public.
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. Roundtable discussions were then held concerning any questions, perceptions, thoughts, or concerns that arose in response to the systematic review.