Consumers in COVID-19 research

Viewing 3 reply threads
  • Author
    • #7253
      Aaron Forbes

      I have read that the level of consumer/community involvement in trials related to COVID has significantly decreased in the UK.  Is this worrying trend also occurring in Australia?

    • #7264

      Hard to be sure Aaron. But on the ACTA ad hoc working party advising the Federal Govt about access to the National Medicines Stockpile we have two consumer reps

    • #7265

      Hi Aaron,

      Great question and we have seen the data from the UK. I think in Australia we too have faced similar challenges, but I know groups such as Telethon Kids and CCHRN are working tirelessly with researchers to enable and ensure involvement…I think researchers and clinicians need to understand despite the time pressures, end user involvement is essential in pandemic research.

      It would be great to look at this in more detail e.g. grant and ethics applications to understand if and how consumers were involved in the Australian led COVID trials, maybe this could be part of the ongoing evaluation of Australia’s response.



    • #7266

      Hi Aaron. Its certainly been reported in the UK as you mention. In Australia what we have heard is that consumer co-design has dropped significantly initially but our consumer representatives from across various disease groups are saying that enquiries for involvement are now flowing through – and the inclusion of consumers in national forums is growing rapidly.

Viewing 3 reply threads
  • You must be logged in to reply to this topic.


The comments and resources posted here have been provided by members of Beyond COVID-19: A solution-focussed forum (‘Forum’) and other sources. They are offered for your reference only and are not intended to represent the best or only approach to any particular issue.

The Beyond COVID-19: A solution-focussed forum has not attempted to evaluate any posted material.

Neither ACTA, as host of the Forum, nor the individuals or collaborators on this Forum, make any guarantee with regard to the accuracy, completeness or suitability of any advice or resource, and they assume no responsibility or liability in connection with the use or misuse of any material.

The comments and resources posted here should not be construed as clinical or legal advice, and users should seek appropriate advice to address specific facts and circumstances.

Copyright in posted materials belongs to the respective owners, whether or not a copyright notice appears on the screen displaying the materials.