Dear

Happy belated international clinical trials day for last Saturday. Hopefully you found a way to celebrate with others through one of the webinars or organisation events happening. Though it is great to have a dedicate day to raise awareness and celebrate clinical trials, I believe it is something that needs to be done year around to build momentum. That's why we try to post onto our Research4Me Facebook page most Tuesdays some kind of story or awareness raising post (check out the #TrialsTues posts), and why I challenged myself this month to post daily the perspectives of the community about clinical trials.

If you haven't seen any of the posts yet, you can catch up via any of the AccessCR social channels (LinkedIn, Instagram, Twitter, Facebook). And once the month is over, we'll collate all the posts into a blog post for future reference on the CCReW website's blog. We still have a couple of days content to fill, so if you have been in a trial, or cared for someone that has, and have something you'd like to share, especially if it is different to what may already have been shared, then please drop us a line as soon as possible. I'd also like to take this opportunity to thank the people in our networks that have already graciously shared their perspectives during this 31 day campaign.

So in other news, it was disappointing to see funding the National Front Door and One Stop Shop didn't receive an explicit mention in the May Budget. I've been thinking alot about what we are going to do to help advocate for systems that create greater efficiency and access to patients to clinical trials. I also  welcome the opportunity to collaborate with other like-minded organisations on whatever they might be doing behind the scenes to secure government interest and funding for this work.  Every day's delay in getting people early access through clinical trials to the interventions that might have a positive impact on their quality or length of life is a day too many, in our humble opinion. While I hear rumbings there might yet be an announcement from the government coming, there is no time to rest in advocating for the benefits of clinical trials for the individual, the community, the healthcare system and the economy.

As an update, I am delighted to have been able to offer four consumers CCReW conference support scholarships to cover all their travel costs to attend the ARCS Conference in Sydney, 6-8 June. Thanks to ARCS Australia for covering all the consumer registration costs with their Consumer Scholarships so the travel funding stretched further. I will be attending the conference to both present, and provide some peer support to all the consumers attending the conference. So if you are going to be there and want to connect, please look out for me near the Consumer Lounge before the conference starts or at lunch times each day (or grab me if you see me wondering around the sessions and drinks).

I am so thankful to all the sponsors who helped us fund the CCReW Travel Scholarships this past year - Medicines Australia, Rare Cancers Australia, TrialDocs, and Lucid Health Consulting. A special mention to Rare Cancers Australia for also partnering with us to distribute the funding with good governance. What started as an initiative to support travel to the ARCS 2022 conference, has ended up helping 14 consumers get to 4 conferences, learning, networking and sharing their voice in spaces that matter to research and therapeutics development. The current funding pool has now finished, and so I will be looking for more sponsors in the near future to make sure we can continue this important activity to support the CCReW be where they need to be. If you want to help, please reach out.

Lastly, I'd like to draw your attention to the work of a group of lung cancer advocates that have supported, engaged with and contributed to AccessCR's activities over time, as my way of returning the blessing (though they haven't asked me to). I always say, if we don't engage with the lived experience to know what is needed, consumers themselves will find a way to make things happen. These advocates are a wonderful example of what such dedication can achieve. Among other things, they have been advocating for access in Australia to a diagnostic test (approved overseas for other cancers) that can potentially materially impact the experience for those with ALK+ lung cancer mentally, emotionally, physically and logically (by requiring a blood test rather than tissue biopsy for more information about their cancer). It hasn't happened, so they have worked with a group of clinicians to design a clinical trial to facilitate access in Australia. They need funding to start the trial, so have launched a fundraising campaign. You can learn more about the difference this trial can make for ALK+ lung cancer patients and donate online. And to top it off, if you donate before 30 June,  Rare Cancers Australia will match funds raised (up to $25,000). I really hope you can get behind this consumer-led initiative and help them get the evidence they need to demonstrate to the goverment the value of funding this techology for patients.

So in wrapping up, please check out the studies, opportunities, activities and resources below. Think about how you can make a difference to raising awareness of and access to clinical trials (or funding the ALK+ group to get their trial off the ground with TOGA). And until we meet again, here's wishing the world is kind to you.

• Involve Australia and Australian Genomics- have your say on the draft guidelines for researchers proposing to involve the Community in Genomic Reseach. Involve Australia have developed Guidelines for Community Involvement in Genomic Research and would like to invite you to participate in the survey and provide your feedback on the draft to ensure that the final Guidelines are fit for purpose. Please take the time to have your say. Feedback is due 26 May (we think).
  
• The Victorian Government is currently working to improve consumer experiences with clinical trials here in Victoria. A key priority of this is improving access to clinical trials and encouraging participation in trials from across Victoria’s diverse communities. We are seeking input from Victorian consumer advocates to share their unique insights. This is the first step in an ongoing plan to engage consumers in clinical trials reform in Victoria. If you are interested in participating in and contributing to clinical trials reform in Victoria, or for more information, please contact the Office of Health and Medical Research (Victorian Government, Department of Health) at OHMR@health.vic.gov.au by May 29, 2023. Please include a little about you and your background with clinical trials + Why you are interested in participating and improving clinical trials for Victorian consumers
  

• Health Technology Assessment Policy and Methods Review – Consultation 1. This is the first consultation of a series related to the review of health technology assessment policy and methods in Australia. For more information, visit the Office of Health Technology Assessment's Consultation Hub. Submissions for consultation 1 close 6 June.  The HTA Review Reference Committee have also opened up expressions of interest for deep dive discussions with them, so read more here and apply by 1 Sep if this is of interest.
  
• Free #NavigatingHealth Community of Practice Webinar 19 Jun 12-1pm AEST: Tests, Trials & Health Care Records (I'll be presenting on accessing and navigating clinical trials).
  
• The Australian Institute of Digital Health are welcoming consumers to the MedInfo23 conference in Sydney 8-12 July and a Consumer Scholarship opportunity is now available for applications. Find out more here.
• Monash Partners free webinar 20 July, 1-2pm. Involving consumers in discovery research - reflections and learnings. Register here.
  
• The Patient Voice Initiative are hosting a webinar about their recent research on how patient communities want to interact with pharma on 24 Aug, 12.30pm AEST (which I will also be participating in). Register free online.
• The Australian Women's Health Network is leading a project to define, develop, bank and share resources to support women's health. There are a range of opportunities to participate in codevelopment sessions, a community of practice, and an online survey or in sharing their communications. Learn more online.
• Improving Palliative, Aged and Chronic Care through Clinical Research and Translation (IMPACCT) focuses on interdisciplinary collaborative research optimising the health and wellbeing of individuals living with life-limiting illnesses and their families. IMPACCT which comprises of the Palliative Care Clinical Studies Collaborative (PaCCSC) and Cancer Symptom Trials (CST) at the University of Technology Sydney, is currently recruiting for the IMPACCT Consumer Advisory Group (CAG). There is no deadline for applications. For more details about the group and applying, visit IMPACCT's website.