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Are we making a difference? Consumer surveys of PPI reps and professionals in Cancer Clinical Studies Groups

2014 Conference

Abstract: The Consumer Liaison Group (CLG) is a national network of cancer patients and carers, whose members’ patient and public involvement (PPI) work is an embedded part of UK cancer research.

The 21 National Cancer Research Institute (NCRI) Clinical Studies Groups (CSGs) develop their own trials and coordinate the UK’s portfolio of trials and other clinical studies. Since 2001 the CSGs have been key to forming a coherent UK-wide research community, and together with the National Institute for Health Research (NIHR) Cancer Clinical Research Network they have overseen the effective delivery of the UK’s cancer trials with world leading recruitment levels.

The membership of each CSG includes key clinicians, researchers, scientists and PPI members. PPI members are expected to work with other PPI members across the CSGs through their membership of the CLG.

NIHR Clinical Research Network (CRN) Cancer undertakes annual surveys as part of intelligence gathering on PPI activity to inform future service planning. PPI members who are working across the NCRI and National Cancer Research Network (NCRN) have been active in the content, design and analysis of the surveys, working closely with the NCRN Co-ordinating Centre.

Surveys are completed by the PPI members, by the CSG Chairs, and by the CSG Scientific Mentors (who mentor the PPI members). This ensures a triangulated perspective of the impact of PPI on the work of the CSG.

This presentation will:

  • Outline how feedback from the surveys has supported improvements to the PPI contribution to the work of the CSGs
  • Share learning about what has worked and what has not
  • Explore areas applicable to other PPI roles in other conditions.

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Authors

Rawlinson ~ Janette

Janette Rawlinson is a Core Member of the National Cancer Research Institute Consumer Liaison Group (NCRI CLG). She is a non-smoking lung cancer survivor, with a career in international business and economic development. She serves on Sandwell and West Birmingham Clinical Commissioning Group, and is a member of NCRI's Lung Clinical Studies Group, the Consumer Liaison Group and National Institute for Health Research's (NIHR's) Strategic Patient and Public Involvement (PPI) Advice, Delivery and Evaluation Panel.

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Stephens ~ Richard

Richard Stephens has patient experience of research having participated in nine clinical trials or other studies. He chairs National Cancer Research Institute (NCRI) Consumer Liaison Group (CLG) and National Institute for Health Research (NIHR) Cancer Patient and Public Involvement Steering Group (PPI SG), and is a PPI rep for NIHR Evaluation, Trials and Studies Coordinating Centre (NETSCC), Medical Research Council (MRC) Clinical Trials Unit (CTU) and Research for Patient Benefit (RfPB). He serves on two trial management groups (TMGs) and on several advisory boards, including Genomics England.

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