Patient and public involvement at EBMLive 2019
30 August 2019
EBMLive is an annual conference by the Centre for Evidence Based Medicine that brings together health professionals, academics and patient partners from around the world, who are interested in evidence based medicine. It is often held at the Said Business School at the University of Oxford, which supports the vibrant and interactive atmosphere that is key to the conference’s success.
This year, we decided to invite a group of patients to a specially tailored patient stream, co-delivered with patient contributors, and kindly co-funded by the NIHR School for Primary Care Research. The patient stream included public talks and engagement activities hosted by members of the Evidence Synthesis Working Group and colleagues at the BMJ.
The attendees were quite a diverse group from across England and were living with a range of health issues. Some had joined campaign groups, like Sling the Mesh and others, including those affected by hormone pregnancy tests and sodium valproate. Others were carers or patients.
We debated and teased out issues around patient and public involvement, including what rights patients have in research. We also sought patients’ priorities for future research asking them what they would research if they were given budgets of £50,000 and £1 million; what they would prioritise if they were the Minister for Health for one day; and we asked them to consider what they would research based on the themes of the NHS long-term plan.
The feedback showed that the patients who attended enjoyed ‘meeting others and sharing ideas’, ‘the honest and frank discussions’, ‘the freedom to think about what is important in research’, ‘the wide diversity of participants’. In general, everyone said they’d have liked more time to spend with others who shared their passion to ‘make healthcare more effective’.
As a team, we benefitted immensely from our interactions with the public attendees. We were reminded of the impact of our research to people’s lives, and we were able to discuss research ideas with enthusiastic and passionate patients and carers.
Dr Anne-Marie Boylan is the Evidence Synthesis Working Group Patient and Public Involvement Lead