We’ve Got It Covered… Mapping the Activities of Members of the NCRI Consumer Forum Across the INVOLVE Research Cycle


Year:

Session type:

Theme:

Richard Stephens1
1NCRI

Abstract

Background

The NCRI Consumer Forum is a UK-wide network of 82 cancer patients and carers. The 51 core members of the Consumer Forum are those who sit on NCRI’s strategic groups, such as the Clinical Studies Groups (CSGs) and CTRad. When an individual member completes a term of office, there is a conscious effort to retain them within the Forum and to redeploy their skills and experience elsewhere in cancer research.

INVOLVE, the NIHR-funded organisation that supports public involvement in research, has defined 9 areas in the research cycle where the public can become involved in health research. It was decided to see if the involvement activities of Forum members covers all 9 areas and thus how widely the Forum’s work is embedded in cancer research.   

Method

As part of the NCRI Review of Consumer Involvement 2014-15, Consumers were asked to list their involvement activities. Every Consumer who sits on an NCRI CSG completes a template report before each meeting, updating their current activities. Regular email correspondence within the Forum encourages members to report and discuss their involvement activities, and the NCRI Consumer Admin Office maintains a spreadsheet to capture this information. 

The 9 INVOLVE areas of the research cycle are Prioritising, Commissioning, Designing, Managing, Undertaking, Analysing/Interpreting, Disseminating, Evaluating, and Identifying Topics.  The involvement activities of Forum members were mapped against these headings. 

 

Results

The most common areas of activity are Managing and Undertaking (eg via CSGs or TSCs/TMGs). Designing, Evaluating and Identifying are well-covered (eg via CSGs and sub-groups) and involvement is increasing in Prioritising and Commissioning (eg via funding panels). The areas with fewest members declaring involvement are Analysing/Interpreting and Disseminating.  

Conclusion

Members of the NCRI Consumer Forum are involved at every stage of the research cycle and their work is embedded in UK cancer research.