Poster Presentation Clinical Oncology Society of Australia Annual Scientific Meeting 2023

Nothing about us without us: Partnering with consumers to promote clinical trials participation – how we tackled this with ConVICTioN (#439)

Vanessa Yenson 1 2 3 , Sonia Dixon 1 , Garth Hungerford 1 , Brian Dalton 1 , Janelle Bowden 4 , Carrie Hayter 5 , Alexandre Stephens 6 , Angela Todd 7 , on behalf of Consumer Voices in Clinical Trials in NSW 1
  1. ConViCTioN, Sydney, NSW, Australia
  2. University of Technology Sydney, Ultimo, NSW, Australia
  3. Cancer Symptom Trials (CST), Ultimo, NSW, Australia
  4. AccessCR, Sydney, NSW
  5. Health Consumers NSW, Sydney, NSW
  6. Northern NSW Local Health District, Lismore, NSW
  7. Sydney Health Partners, Sydney, NSW, Australia

AIM: To engage and support a group of consumers with diverse experiences to develop targeted resources that increase awareness and participation in clinical trials among the wider community.

METHOD: An Expression of Interest (EOI) process invited people in NSW to join a consumer group supported by: Sydney Health Partners, Health Consumers NSW, AccessCR and Northern NSW Local Health District.

RESULTS: This consumer-led project received funding for 15 online consumer members, selected from 42 EOI submissions representing people from culturally and linguistically diverse and Indigenous backgrounds, with diversity in health conditions (including cancer), age, gender, NSW location, and clinical trial and lived experience. Initial meetings established two co-chairs, terms of reference, reimbursement plan, project methodology and agreed on the group name: Consumer Voices In Clinical Trials NSW (ConVICTioN). Members completed fact-finding exercises to identify what was missing from current awareness resources and brainstormed solutions to fill the gaps. Since its inception in 2022, ConVICTioN has developed: four resources for consumers by consumers (a webinar; a 7-minute video; infographic; and checklist for others interested in clinical trials). All resources are freely available on the ConViCTioN website1, and have been disseminated at a number of conferences and events.

CONCLUSION: ConVICTioN is a highly productive and motivated consumer group, contributing new insights and resources to support raising awareness and recruitment to clinical trials. It is consumer-led, with outcomes being consumer-decided, designed, and delivered. Key learnings: consumers are eager to learn about and become involved in clinical trials. Easy-to-understand resources and open discussions with motivated consumers have the potential to aid recruitment and retention in clinical trials. Success to date has hinged on shared “passion, dedication and enthusiasm” (SD) of the consumers and project team for the importance of clinical trials. Genuine partnerships with consumers leads to real impact – nothing about us without us.

 

 

 

 

  1. ConVICTioN Website with freely available resources: http://clinicaltrials-consumervoices.com.au/home/