A screening of the film People are Messy at the Ultimate Picture Palace followed by a group discussion marked the launch of the Oxford Blood Group, a new local patient engagement group for those with blood disorders. The group is supported by the NIHR Oxford BRC.
The Oxford Blood Group is a patient engagement group for anyone who has had experience of a haematology condition, either as a patient or someone close to a patient. The group aims to promote and facilitate good practice in patient and public involvement in haematology research.
People are Messy is the recording of the play of the same name produced by Oxford patients and researchers in collaboration with the Theatre of Debate.
The play explores the experience of two young men with a rare inherited anaemia, and their efforts to contribute to clinical research. It touches on the interests and constraints of all participants in patient involvement, from how patients interact with their clinicians to the time constraints on researchers and their own emotional baggage.
“People are Messy was a provocative and emotional film that stimulated an interesting discussion between patients, researchers and doctors,” said Dr Bethan Psaila, a researcher at the MRC Molecular Haematology Unit (MRC MHU) who attended the event.
“It underlined the importance of an open dialogue between clinician scientists and patients on priorities for medical research, and prompted a number of ideas for how the Oxford Blood Group can help us achieve that here in Oxford.”
The discussion considered difficult questions such as the need for psychological support for patients following a life-changing diagnosis, time constraints on NHS professionals and the lack of ‘protected time’ for researchers to involve patients in their research.
“This event was a wonderful start to a great conversation; patients, doctors and scientists all on an equal footing, sharing viewpoints and listening to each other,” said Dr Noémi Roy, Consultant Haematologist and co-founder of the Oxford Blood Group.
“Only by understanding each other will we begin to make a real change in how patients are involved in shaping the research we do. So let’s keep talking.“
Find out more about the Oxford Blood Group.