Strengthening Consumer Engagement in Clinical Trials

Strengthen the investigator-led sector’s or the research sector’s capacity and ability to involve consumers in all activities across the research continuum.

  • Identify and disseminate best practice options for the involvement of consumers across the research sector’s activities
  • Develop and disseminate messages to the general community about the value of clinical trials, particularly around comparative effectiveness trials

Recent group activities

  • International Best Practice of Consumer Involvement in Research: Discussion Paper
  • Consumer Involvement in Clinical Trials: Consultation Report
  • Workshop: Consumer Involvement & Engagement Toolkit – User Priority Setting
  • AHRA Consumer & Community Involvement Project: attended national workshop
  • Presented works at ARCS, SLSHD, Whitecoats, NHMRC, ACTA Summit, Bio Connections Australia and ACTA International Clinical Trials Conference 2019
  • Clinical trial diversity project: aiming to improve clinical trial awareness, involvement, and access, with and for people from culturally and linguistically diverse (CALD) backgrounds within Australia.

Current group activities

The group is launching its Consumer Involvement and Engagement Toolkit, an online repository of guidance and tools to facilitate consumer involvement and engagement along the lifecycle of a clinical trial, and to support active and collaborative consumer partnerships with both researchers and research-focused organisations. This was developed in collaboration with CT:IQ.

Future group activities

This year, the group will develop recommendations to guide future action to engage the general community and enhance clinical trial awareness.

They will host a workshop on identifying opportunities and challenges of clinical trial awareness and engagement in the broader community and develop a recommendation report from the workshop outcomes.

With the Consumer Involvement and Engagement Toolkit now developed, the group will continue to maintain, review and develop the Consumer Involvement and Engagement Toolkit following the initial launch at the 2019 ACTA International Clinical Trials Conference. They will also continue to promote and facilitate the online toolkit across the sector.

They are planning two events (or webinars) to promote consumer involvement and engagement in clinical trials.

Group Leadership

  • Mr Alex Economides
  • Ms Anne McKenzie
  • A/Prof Angela Todd
  • Dr Janelle Bowden
  • Ms Tanya Symons
  • Prof John Zalcberg

Members

  • Mr James Ansell
  • Mr Russell Conley
  • Dr Karena Conroy
  • Ms Talia Gutman
  • Mr Ben Horgan
  • Dr Catherine Holliday
  • Mr Dan Kent
  • Dr Heinz Kestermann
  • Dr Lisa Murphy
  • A/Prof Rinki Murphy
  • Prof Alistair Nicol
  • Mr Michael Nutt
  • Ms Anna Parker
  • Dr Noela M Prasad
  • Dr Manoj Saxena
  • Mr Max Shub
  • Prof Julie Stout
  • Ms Catherine Wilson
  • Dr Shilpa Jesudason

Project Officer

Ms Nicola Straiton

Board Sponsors

  • Mr Kieran Schneemann
  • Ms Anne McKenzie

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