Consumers in COVID-19 research

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    • #7253
      Aaron Forbes
      Participant

      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
      jz
      Participant

      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
      Nicola
      Participant

      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.

      Thanks

      Nicola

    • #7266
      praxisaus
      Moderator

      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.

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