Clinical trials sector consumer involvement consultations – progress and next steps


ACTA’s Strengthening Consumer Engagement in Developing, Conducting and Reporting Clinical Trials Reference Group completed its inaugural sector-wide consumer involvement consultation earlier this year to capture how CTNs involve consumers generally and in trials specifically. There was a great response and we are working on preliminary analysis which we will share with members and stakeholders in due course. 

That initial consultation, coupled with our review of international best practice, is informing a follow-up survey in which we will consult consumers directly to understand their involvement with networks, identify activities consumers help to develop in partnership with clinicians and researchers, and discover effective support systems facilitating consumer engagement. Thank you to CTN networks that have agreed to collaborate with ACTA by connecting us with your consumer stakeholders, we will be in touch soon with next steps detail. 

In the meantime, clinical trials effectiveness and public engagement being high on the national health agenda, partner and peer organisations are conducting reviews and research complementary to ACTA’s work. One example is a planned survey by the Australian Health Research Alliance (AHRA) to audit consumer and community activities in healthcare research and also calling for best practice examples. We mention this AHRA survey in case you receive both and to draw the distinction. ACTA is in contact with AHRA and we have agreed in principle to share insights while avoiding duplication.