“Nothing about us, without us”

Emily Boldison, BCI – UK Engagement Facilitator, reports back from attending an NIHR Patient-Public Group.

The involvement of patients and the public in research is becoming more and more common. However there is a concern that it becomes a box ticking exercise without real meaning. INVOLVE defines public involvement in research as research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them. Our programme is extremely lucky to have such a highly engaged Patient-Public Group working with us, directing our research and actively participating in the work we do.

Earlier this week I was invited to speak to another very active group, the NIHR Leeds Clinical Research Facility Cancer PPIE. After speaking to them about my experiences with Patient-Public Involvement (PPI), I got to hear about three other exciting projects all seeking input from patients. The NIHR BioResource is a programme looking at common and rare diseases. They are requesting the help of members of the public in generating a database of blood samples. This database when it grows will enable research teams to access large numbers of individuals to help in the study of rare diseases. Next up the group were asked for input into a new Colorectal Surgery Recovery Information leaflet, which is being designed by students in the School of Design and finally a representative from the Yorkshire Cancer Research Clinical Trials Unit at Leeds spoke to the group about seeking additional patient representatives to join them.

The meeting further emphasised to me the importance of PPI and how there are so many varied ways that people can play a valuable role in health research.