Last year, we held a workshop in partnership with Health Consumers NSW (HCNSW) with health consumers to understand what they perceived as the barriers and enablers to becoming more involved as medical research and clinical trials as partners in that research.

Today we are pleased to release in partnership with HCNSW the report from that workshop.

The following themes were identified to be impacting the level of involvement of consumers in research, from the health consumer perspective:  

  • types of research being conducted
  • availability and experience of consumers
  • funding consumer involvement
  • finding the ‘right’ consumer
  • consumer training and support
  • research beliefs and culture
  • research training
  • clarity about roles and responsibilities
  • language.

Key enablers identified which would help support increased consumer involvement in research included:

  • appropriate selection processes and training for consumer representatives
  • flexibility in working with consumers and respecting the value of their contribution
  • training of researchers to better partner with consumers
  • increased/better use of plain language by researchers
  • funding consumer involvement in research
  • support materials and structures for both consumers and researchers.

CLICK HERE to download a copy of the report.

We’d like to thank the workshop participants for the generosity of their time and the experiences they shared.



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