Abstract

Historically, services providing care for people with long term conditions (LTCs), together with any associated research agendas, have been driven entirely by clinicians. In many cases this is well meaning and is done with some consideration of what patients need, but almost always the end result relies on the clinicians' interpretation of what they think patients need.

Recently it has become more usual to involve patents in planning research projects and service changes directly. Initial attempts to give patients genuine input were ad hoc in nature and so patient contributions could be lacking, ignored or misinterpreted.

In many cases having poor patient input is worse than no input at all as it lends false credibility to the process. Lately a range of formal requirements, arrangements and methods have become adopted and this presentation will focus on how these can be brought to bear to ensure meaningful patient and public involvement in planning research. From national guidance such as the UK's INVOLVE initiative, to local standard operating procedures we will share experiences and lessons learned.

The session will close with a practical summary of how to make PPI contributions genuine and meaningful, and some insights into possible future developments as this aspect of the research process matures and consolidates.