Background

This poster summarises the place of patient, carer and public involvement in the UK and our main priorities in working with research teams.

Method

Academic research is structured around key organisations:

_The National Cancer Research Institute (NCRI) which brings together government and charitable funders to set priorities and co-ordinate funding of cancer research

_NCRI Clinical Studies Groups which provide the site-specific leadership to develop studies which will, if funded, be adopted into the national portfolio of cancer studies as part of the National Institute for Health Research.

_The NIHR National Cancer Research Network which leads the delivery of research through research networks

_Related groups and initiatives which facilitate or carry out specific tasks in research development, management and monitoring

Results

Patients have input at all levels and their voice has, throughout the history of NCRI & NCRN, been considered critically important in developing research. The key principles from researchers and clinicians are:

_Working with consumers as partners in the research effort

_Involving consumers in developing strategy as well as specific initiatives and studies

_Listening to the consumer on research needs and the experience of participating in research

_Learning from experience to increase the impact of the consumer role in cancer research

The NCRI Consumer Liaison Group brings together patient and carers to support research development at all levels from NCRI Board, through CSGs to membership of individual Trial and Study Management groups.

Impact has been captured in reports from researchers, clinicians and patients.

Conclusion

Working together in a robust partnership is a particular strength in UK cancer research and forms the ideal platform to truly achieve ‘Research for Patient Benefit’. This is recognised in the recent white paper [1] and our first decade of patient and public involvement is captured in the NCRI report [2].