From information, to interest, to engagement: A charity’s perspective on patient/public involvement in research

2014 Conference

Abstract: This presentation will cover the role of a charity in increasing public awareness, interest and engagement with research.

The Scottish Network for Arthritis in Children (SNAC) is a parent volunteer-led charity which supports families affected by Juvenile Idiopathic Arthritis (JIA). One aim of the charity is to ensure accurate, up-to-date information about research in paediatric rheumatology is readily available. SNAC connects families through national events – a family weekend, a parents’ day – smaller local events and social media. SNAC works in collaboration with the Scottish Paediatric Rheumatology Service which provides the educational content to the events.

SNAC involves people by:

• Providing relevant information SNAC has a research tab on its website, explaining what research is and detailing current trials in paediatric rheumatology.
• Providing discussion The educational programme for SNAC events always incorporates a session on research, including discussions on the importance of research, dissemination of research findings and the role of the public in research.
•  Social media SNAC gives opportunities for involvement via social media. For example parents participated in a research priority-setting activity via Facebook: ‘what are your top three concerns regarding your child’s condition and care’?
• Impact Evaluation of the family weekend demonstrated a knowledge shift among families in awareness of research from low to high.