Dear

It's been a long time coming, but welcome to the first CCReW newsletter for 2024. It's probably a little long given its been a while and there is so much going on. This year, I am also going to trial monthly newsletters, but if there is too much going on or deadlines I don't want you to miss knowing about, it might become more regular.

I was saddened to see Victoria's health consumer representative organisation (Health Issues Centre) close its doors recently after 40 years. It has given me pause for what that means for a new initiative like CCReW in trying to establish itself as a voice and support for consumers in research.  There is more call on the consumer voice than ever in health and research, and yet dwindling financial support for the grass roots efforts.  I would love to know what this community is thinking, hearing, seeing... what does the future look like at a structural level for growing, supporting and advocating the consumer voice in health and research? Is this activity sustainable?

It really feels like we are at a pivotal moment for the consumer voice in health and research related sectors, especially with the AHRA consultations and survey reviewing the National Statement on community and consumer involvement (CCI) in health and medical research, as well as the Commonwealth's consultation on the 'co-design of an enhanced consumer engagement process for health technology assessment' which includes reference to the research phase of product development. I strongly encourage you to get involved in these consultations that provide real platforms for change, and which close 30 Apr and 2 Apr respectively. And to help inform our own submissions and yours, I'm hosting an opportunity to chat together online (via Teams) about the 'co-design' consultation Mon 25th Mar at 12.30 AEDT, and on the National CCI Statement consultation on Fri 3 May at 1pm AEST. Any consumers interested in joining the conversations are most welcome. Just click those links on the day or time to join. (Or you can email me and I'll send you the calendar invites including the link).

As in previous years, ARCS Australia are offering scholarships to cover cost of the registration fees to attend their annual conference in Sydney 12-14 June. You must apply by Sunday 21 Apr. This is a great opportunity for consumers to learn about all facets of the therapeutics industry, from research to reimbursement, contribute to conversations around the changes happening or needed, and network. There are no travel scholarships for this at present, but stay tuned in case we find some inspired organisations willing to work with us (call me if that's you!).

The Australian Clinical Trials Education Centre (A-CTEC) are holding their conference on 10-11 May in Melbourne (and virtually). Registration fees are relatively affordable, though we appreciate $75 for virtual attendance can still be a burden for consumers. So we will be looking for sponsorship for scholarships for virtual attendance at this conference too.

I'd love there to be more CCReW meet-ups this year so you can get to know other like-minded people local to you. As I rarely travel, if you're up for hosting one near you (ie making the lunch or dinner reservation), then I love to see more of this connecting nationally, and I will provide the help to promote it. The next Sydney CCReW meetup will be for dinner in Darling Harbour on the 13 June. It's times with the ARCS conference, so consumers in town for that can come along, as well as any Sydney-siders up for some networking.

Finally, with May rapidly approaching and being a month Clinical Trials are celebrated internationally, I'd encourage you to plan early if you'd like to use the opportunity to thank clinical trial participants with one of our Origami Sunflowers. These special flowers are a handmade investment of time and love you can gift back to your participants, in recognition and solidarity for their efforts.  You can purchase kits to make them yourself, or pre-made sunflowers that either you can gift or we can gift on your behalf. Check our the CCReW shop now for these (or other ideas), and order early if you'd like them in time for May.

I suspect I could keep rattling on about everything happening. But rather than that, I'll let you catch up on other opportunities and resources in the sections below. So to sign off, I hope that you keep well and that life is kind to you until we meet again.

                                                Janelle, AccessCR and the CCReW initiative