Kidney Research UK: Developing better patient engagement in research – a pilot scheme within the dialysis community

2014 Conference

Abstract: Kidney Research UK welcomes National Institute for Health Research’s (NIHR’s) OK to ask campaign and web-based engagement activity. However, discussions with its Lay Advisory Committees, patients and carers from around the UK highlighted the need to understand more about achieving effective engagement, responding to feedback and maintaining successful relationships. A more personalised approach supported by national campaigns was needed. Consequently, a small-scale pilot project was developed to determine aspirations and needs, identify best practice, sustain engagement and promote research.

A three-month dialysis focused community pilot in Mid-Wales and Shropshire involved two volunteer research champions. It identified the need for a flexible ‘toolkit’ approach including information on research impact and a questionnaire. Ten people were signed-up and subsequently stewarded into various involvement opportunities; three volunteers are now involved in advising on a large clinical study. The learnings have also informed our plans to achieve a pool of 50 research champions by 2015.

This is just the start of the journey; for many patients it will take time to be able to or to be motivated towards finding out about research and how to get involved. Relationship building for the longer-term is key as well as the development of support. A further pilot is planned in Scotland in the ‘transplant’ community.

This exercise and its replication to other sites has the potential to deliver an incremental pool of patient advocates providing specific advice for projects as reflected in the RAPPORT (ReseArch with Patient and Public invOlvement: a RealisT evaluation) study and delivering insightful input to the overall NHS drive for increased patient involvement in research.

Download poster