Partnership in Research. CCReW, 20May25

Dear

Happy International Clinical Trials Day. I hope you get an opportunity to engage in one of the webinars or events being held around this day to raise awareness of, celebrate or improve clinical trials. If you haven’t tapped in to an event yet, there are a few ideas listed in the events section below. It includes our next Clinical Trials 101 webinar next week, which is specifically for those who nothing about clinical trials, but would like to change that.

National Volunteer Week also kicked off yesterday, and so I’d like to send our a big THANKYOU to all the volunteers in the health and medical research sector, who are doing their bit to design, conduct, participate in, partner in, and improve research. We see and recognise your time and efforts.

Before our next newsletter, we’ll be hosting our next CCReW meetup on the 4th June in Darling Harbour, Sydney. So if you are a consumer or consumer engagement professional in Sydney that night, why not come along for dinner. These dinners are always a highlight for me – seeing the connections being made and the networks being deepened.

And in a little bit of special news, I’m a finalist for a PFMD Made with Patients 2025 Champions Award. The winners will be announced in a livestream from the Patient Engagement Open Forum in Italy on the 12th Jun, 2am AEST (Register here if interested). I’m humbled to 1. have been event nominated (thanks Deb), and 2. to have been selected as a finalist alongside the other 8 amazing international champions. Good luck to all the other finalists, and I look forward to seeing which of you are celebrated this year. While I am a finalist, I see this honour as an awesome opportunity to put the spotlight on Australia internationally for what we are all doing here. Between this, and the Australian Consumer Partnerships in Research Awards, what an opportunity this year brings to show pride in and inspire action for what’s possible when consumers partner with researchers.

I'm looking forward to supporting a new short-term subcommittee for a CT:IQ project seeking to support researchers to help make clinical trials more convenient for participants. If you'd like to know more about potentially joining the subcommittee, check out the invitation video and information here, and apply by the 30 May.

Some webinars, training, events that may be of interest:

The Global Health Network and others are hosting a webinar on communicating results to trial participants. Jun 2, 7pm AEST.
We'll be holding CCReW meetups in Sydney on 4 June (during the ARCS Conference), and Melbourne on 21 July. Click the links to each event if you are a consumer partner or consumer engagement professional interested in joining us. Spaces are limited.
Anyone lucky enough to be able to travel to Italy in June? Then maybe the Patient Engagement Open Forum, 10-12 June, is something you might like to drop into. One day we hope to get to this!
VCCC are hosting a webinar ‘Consumer advocacy in rural education and research’ 19 Jun, 12-1.30pm.
MRCT's “Ethics and Review of Interventional Clinical Research,” is now available on WHO’s new and revitalized online learning platform, WHO Academy. This course is available free of charge worldwide. Click here to create a WHO Academy account to enroll.

And some international clinical trials day related events, if you haven't yet engaged in one:

20 May, range of events - Child and Adolescent Health Service/The Kids researchers, WA are hosting stalls and workshops to celebrate ICTD.
20 May, 12-1pm - Hunter Medical Research Institute ICTD Seminar - In person and Zoom
20 May, 1-2pm - CT:IQ Online webinar - Sharing Clinical Research Results with Australian Participants
20 May, 2:30-4pm - ACTA - 2025 ACTA Trial of the Year Awards Ceremony, NSW Parliament House.
20 May, 9-5.30pm Spanish time - ECRIN - Rethinking Clinical Trials: Inclusivity in Practice (For noting, ECRIN, is the organisation that launched the first ICTD celebrations). Registrations still open for online attendance.
20 May, 3:30pm - 4:30pm (AEST) St Vincent's Melbourne are holding an online panel conversation bringing together voices from across the clinical trials journey.
20 May, 5pm - White Coats Foundation webinar - Asking your doctor about clinical trials: bridging the clinical trial conversation gap'.

See below for consultation activities currently seeking input:

The VCCC Alliance conducts a biennial Brand Perception Survey to test the understanding and awareness of the organisation, By completing the survey, you'll be entered into a draw to win one of 10 $100 Visa gift vouchers!
I don’t know much about it, but the ARDC Community Data Lab project looks interesting. They say ‘our goal is to develop infrastructure that maximises impact for research and researchers by involving the community in its creation' and they are seeking feedback on their draft project plan. Find out more here.
MRCT, 24 Jun: Your Voice, Global Impact: Join the Clinical Research Glossary’s Annual Public Review Process
Tues, 24 June, 3-4 PM ET webinar to launch the MRCT Center and WCG’s Review Framework for Clinical Research Involving Artificial Intelligence (AI).

See below an opportunity to partner with or in research. (We haven't had time to scout many this month, but please continue to share if you have opportunities you would like listed here in the future).

We are supporting CT:IQ to convene a short term subcommittee for a project looking at how clinical trials can be delivered more flexible (ie made more convenient for trial participants). If you’ve participated in a trial, and think you could help, watch the 4min invitation video, review the information online and consider applying by 30 May.
Expressions of Interest are sought from individuals across Australia to join the National Steering Group for the Empowering Regional Cancer Care in Underserved Populations project, led by the VCCC Alliance and funded by the Department of Health and Aged Care. Apply by 31 May.

Here's some recent papers and resources we thought you might find interesting:

CT:IQ’s Beyond the Form Project has now launch a toolkit to support better communication with trial participants throughout and beyond a clinical trial. Check it out!
Global Experts Convene in Kathmandu to Co-Design Innovative Course on Community Engagement in Clinical Trials. MESH, May25.
Want some tips of where to find funding for community engagement? MESH have put together some resources.
Design and implementation of a Community Expert Group comprised of people with lived expertise of homelessness at an academic health research center: a program description and analysis of challenges. Res Involv Eng May25
Research collaboration with care home residents: a systematic review of public involvement approaches. Res Involv Eng May25.
Health researchers' experience collaborating with patient partners: a qualitative study. Res Involv Eng May25.
Patient and public involvement in dementia and neuroprogressive conditions: commentary from NHS Scotland based ‘partners in research’. Res Involv Eng May25.
Learning to work together: experiences of researchers and family partners in a patient-oriented research team. Res Involv Eng May25.
Embedding consumer and community involvement in antenatal healthcare research: A methodological approach and perspectives of culturally and linguistically diverse women in Australia. Res Involv Eng May25.
Stronger together; evaluating consumers and researchers working in partnership. Res Involv Eng May25.
Supporting consumer engagement in health research about chronic conditions: a scoping review of evidence-based resources. Res Involv Eng Apr25.
Addressing power imbalance in research: exploring power in integrated knowledge translation health research. Res Involv Eng Apr25
New MRCT/international initiative: Co-Creating Clinical Research Competencies to Support Effective Patient Partner Engagement Activities
New NSW Health Research and Innovation Strategy to drive NSW’s health and economic prosperity. May25
Improving Clinical Trial Reporting with CONSORT 2025 Updates. Appl Clin Trials May 25. WHO World report on social determinants of health equity. May 25.

Entries have now closed for the #CPIR2025Awards. Judging is now underway on the 59 entries accepted for assessment.

Keep your eyes peeled for when we launch the Public Voting for a People's Choice Award and registrations open for the final virtual event, expected mid June!

With the public launch imminent, now is the time to showcase your organisation's commitment to consumer partnership by sponsoring these Awards, just like Bellberry, Mater Research, Save our Sons Duchenne Foundation and Curtin University's enAble Institute have. We still need your help!

Learn more at the Awards website or drop us a query to cpir@accesscr.com.au.