NCRI Consumer Forum: Patients as Partners in Cancer Research 


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Richard Stephens1,Richard Stephens2,Mat Baker2,Emma Kinloch3,Liane Hazell1
1NCRI,2NCRI Consumer Forum,3NCRI Consumer Lead

Abstract

Background

The NCRI Consumer Forum is a professional, focussed and committed group of 92 consumer research partners who help NCRI achieve its aims by working in collaboration. NCRI Consumers have developed Value and Impact Measures (‘VIM’), a suite of metrics capturing the range of individual activities and the collective contribution of NCRI Consumers to research. 

Method

VIM data is collected via an annual survey of the 92 members of the NCRI Consumer Forum. 60 of the 92 NCRI Consumers have returned their 2019 VIM submission. Additional data is collected via ad hoc reports, meeting attendee lists etc.

Results

60 Consumers work with research funders or other organisations beyond the NCRI.

47 Consumers work with charities, NHS Trusts, online communities, local patient groups et al.

27 Consumers are NIHR LCRN Patient Research Ambassadors.

 

20 Consumers work/have worked with strategic bodies e.g. NICE, MHRA, HRA, BBMRI-ERIC, EORTC.

22 Consumers work/have worked with industry including Big Pharma, biotech companies and medical device manufacturers.

 

40 Consumers serve on Trial Management Groups and/or Trial Steering Committees.

20 Consumers sit/have sat on research funding committees, national and local, specific and generic.

14 Consumers hold governance/accountability posts, e.g. Board members, Charity Trustees, NHS Commissioners.

 

25 Consumers have been published in peer-reviewed journals.

46 Consumers have presented at conferences or events throughout UK and internationally.

 

15 of the 16 NCRI Partners have NCRI Consumers involved in their work.

 

NCRI Consumers are preparing examples and case studies to illustrate these numbers and to show linkages between them.

Conclusion

The NCRI Consumer Forum has 92 motivated, educated, patient and carer volunteers, working extensively and collaboratively to improve the quality of cancer research in the UK and beyond.