Meaningfully and effectively engaging patients and the public in research

This week’s AWRC Lunch and Learn session sparked some great discussion on how to meaningfully and effectively engage patients and the public in research.

Dr Elysa Ioannou of the School of Sport and Physical Activity is a researcher on ENHANCE, a collaborative project evaluating 38 NHS Complications of Excess Weight (CEW) clinics across England.

Children, young people and their families have been at the heart of ENHANCE from the very beginning. A group of young people and their families / carers self-titled the ARROWS worked with the research team to help design the project at pre and post award stages, sharing valuable insights into what needs to be considered for working with other families attending CEW clinics.

Elysa shared powerful insights and reflections on an innovative residential experience designed to connect the young people and their families with each other and  the research team. Participating in games and outdoor activities help to build trust in the group, helping them open up and giving the research team a deeper understanding of their lived experiences of their obesity, comorbidities and health care services.

The audience had plenty of questions, and the discussion led to some key takeaways:

• Don’t be afraid to budget significantly for PPI activity when writing grants
• Agree and set expectations and ground rules for groups (and researchers) in advance
• Be honest about the scope and speed of influence
• Ensure communication is straightforward, clear, and developmentally and age appropriate
• Remember PPI groups don’t represent the whole population. Their insights are important, but need to be triangulated with other data
• Plan well for PPI activity but be ready to be flexible

Thanks to everyone who attended, and especially to Elysa for leading a brilliant session on such an important subject.

ENHANCE is funded by NIHR HSDR (ref 158453) and being delivered in collaboration with Sheffield Hallam University, Leeds Beckett University, University of Leeds, University of Bristol, University of Sheffield, Sheffield Children’s Hospital Trust, Leeds Teaching Hospitals Trust, Personal Lifestyle Management and Nifty Fox Creative. The study team includes a Patient and Public Involvement Group including CYP and their families from Sheffield, Leeds and Bristol.