Over the last 18 months, AccessCR has been part of a project team of people from Sydney Health Partners, Health Consumer NSW and Northern NSW Local Health District supporting the establishment of a Consumer Advisory Group for Clinical Trials in NSW. This activity was funded by clinicaltrialsNSW and significant in-kind contributions from everyone involved.
The consumer group named themselves ConViCTioN - Consumer Voices in Clinical Trials in NSW. Membership of the group includes people from all over NSW (metro, regional and rural), people from different ethnic backgrounds, and people with varying degrees of experience with clinical trials.
The purpose of the group is to provide consumer perspectives on how we might tackle awareness of, and increase participation in clinical trials in NSW, though naturally, there are no borders in whom can access and use the resources they develop.
What I love about this group is their collegiality, their depth of experience of the health system and the open generosity with which they share their individual experiences and ideas. When you bring together 12 people from very diverse backgrounds and experiences, you might expect the occasional tiff. This group however has always shown nothing but respect for each other and a willingness to roll up their sleeves and work hard. I think that is because they are all very focussed and united on the purpose - increased awareness and access to clinical trials.
Through 2022, the group learned together about clinical trials and public perceptions of them, both from the project team, and through engaging with their own networks. They looked through the many different types of websites, videos, brochures already available to raise awareness of clinical trials, and came up with some ideas on what was missing. What was missing was the voice of the consumers sharing the benefits of clinical trials to consumers, rather than from a researcher lens.
In May 22, they held a webinar demystifying what it was like being in a trial and how to go about finding trials.
In Nov 22, there was a soft launch of a checklist of questions they felt people needed to know to ask researchers, as well as a poster they hope will be in every medical waiting room in the country encouraging people to seek out more information about clinical trials. This was done via a poster at the National Health and Medical Research Council's Research Translation Long weekend.
These resources were officially launched at a Sydney Health Partners Consumer Networking Day, held on Wed 15 February. The launch included a special video with consumers talking about why clinical trials are so important, from the consumer perspective.
I encourage you to not only check out the ConViCTioN website, but to use and share all their fabulous resources which have been made freely available through the support of clinicaltrialsNSW. They have been designed by consumers, for consumers.
If we are not listening to the voices of consumers around clinical trials, we are missing a really important perspective and partner, The consequence of that failure to listen will be that the research sector will never have all the answers it needs to improve awareness of, participation in and the experience of clinical trials.
The initial funding for ConVicTion has expired, and the group have been waiting anxiously since late last year to find out if they will be refunded. They have a long agenda of activities they would like to continue to pursue to help drive awareness and participation in clinical trials. In the meantime, the group members are taking every opportunity they can find to share knowledge of these resources and ensure their voices help others. I hope you will support them in these efforts.
It has been my honour to work with this dedicated group. They are a wonderful example of CCReW, and deserve support. I look forward to enjoying conversations with them in the months and years ahead.