Why Involve ‘Consumers’ in Cancer Research?


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Janette Rawlinson1
1NCRI CSG Lung

Abstract

Background

Involving people affected by cancer as ‘consumers’ is embedded in UK cancer research.

National Cancer Research Institute’s (NCRI) 21 Clinical Studies Groups (CSGs) develop their own trials and coordinate the UK’s cancer studies’ portfolio. Consumers work alongside researchers, clinicians and other professionals contributing their perspectives as valued group members.

Since 2001, consumer involvement has developed a national network of cancer patients and carers, helping the UK amass considerable experience and helping to achieve world leading cancer trial recruitment levels.

Regular surveys are undertaken to assess such involvement’s effectiveness. The most recent (2014) informed a strategic review of NCRI consumer involvement.

Method

An electronic survey was issued to CSG Chairs, consumers and scientific mentors simultaneously, allowing triangulated results to be collated into a report suitable for different audiences.

Results

Response rates 68.5% consumers, (n35), 52% Chairs’ (n21) and 42% Scientific mentors(n19)

Key findings were presented to CSG Chairs and NCRI Consumer Liaison Group.

The report focused on 3 areas:- i) Contribution, ii) Support and iii) Impact.

Key findings were

  • Consumer contribution is valued by Chairs and mentors, especially for CTAAC applications, bringing valuable perspectives to aid research
  • Consumers bring personal and professional skills and experience to benefit CSG work beyond the assumed ‘patient’ perspective
  • Consumer input is embedded into CSG work as an integral part of the NCRI’s and its UK partners’ cancer research.

Some direct impact outcomes included:-

  • Developing an active and successful working party on symptom management
  • A controversial proposal for surgery in advanced lung cancer thought to be a step too far by many clinicians was welcomed as being probably a popular proposal by the PPI member

Conclusion

Consumer contribution to cancer research is vital to ensure the patient voice is considered at all stages.