Merry Christmas - Important CCReW Research News 20Dec24

So the first project I am finally happy to be able to make public is a piece of work commissioned by BMS Australia. On an annual basis, BMS Australia invites patient organisations to a Shaping Healthcare Together Roundtable in November. BMS Australia wanted to focus this year's Roundtable on how early and continuous engagement of patient communities in HTA processes might be facilitated, given the expectation that the HTA Review Report and Enhance HTA Reports would come out sometime this year.

As work on this started prior to the release of the Reports, we didn't know what the recommendations would be. So I focussed on 3 broad and interrelated themes that I believe fundamentally impact the ability of consumers to engage across the lifecycle of therapeutic products, from research and development to access and reimbursement. Those themes are:
* Access to Information
* Legal and Compliance Considerations
* Trust and Rules of Engagement

Thankfully, these themes did relate nicely to a number of the recommendations in the 2 reports released in September. By now sharing this Paper, BMS and I hope to add to the public discourse around what might be needed to facilitate early and continuous engagement of patient communities across the HTA lifecycle. If you don't have time to read the full Paper, there's a 3-page summary of the concepts also available. We hope to explore these themes further in 2025 in light of discussions at the Roundtable (summarised in the BMS Australia Patients and Parliament Summit Report). You can access all 2 documents via the AccessCR webpage, if you want to make them easy to share, and please get in touch if you have any feedback or thoughts on the Paper.

As previously shared, at the start of the month I was able to attend the Australian Clinical Trials Alliance clinical trials annual scientific meeting in Melbourne. I only mention it again now as I have now published the preamble I shared as Chair of the Plenary 2 session, leading into the panel discussion with Anne Mackenzie AM, John Stubbs AM, Karen van Gorp, and Dr Shyamsundar Muthuramalingam. In it, I lay out the case that the 'why' involve consumers has been made, and we now to need to figure out what else is needed for involving consumers to be normal practice in research. If you didn't attend the conference (or did and want to take another look) you can take a read of it here.

The relevance of sharing this that the question of 'what infrastructure is needed' has been very much on my mind, and that of other colleagues. I am not sure we have a straight answer on that, and it is something I want to help figure out in 2025. To that end, if you have thoughts on what infrastructure YOU think is needed to support consumers to be involved in research, then I invite you to share YOUR thoughts in this short survey over the next month or so. The results will figure into what advocacy we do next year to help address the identified gaps for CCReW in particular. We know there are needs on both the consumer and research sides of the fence, so both perspectives are welcome to respond to the survey.

A new National Health and Medical Research Strategy is being developed. A webinar was held yesterday (I was in a plane so am eagerly waiting the recording). However a survey was released at the end of the webinar to capture reactions on the development of the strategy. Visit this webpage for the link. I will keep the Facebook group updated as I hear more, and of course, provide updates through this newsletter.

And for something more light, I've posted a challenge in our Facebook group to share a photo of your Christmas decorations, to help spread the joy. You have until 22 Dec to post a picture on the relevant featured post to be in the running for a $20 gift card for the picture that brings me most joy.

And now for the big news, and thanks to everyone that has contributed ideas, thoughts, etc to this to get it off the ground...

Today, I officially launch the SAVE THE DATE for what will be our flagship event in 2025 for CCReW (and their research partners) - the Australian Consumer Partnerships in Research Awards 2025 (#CPIR2025Awards). On the 12-13 August next year, we will host a virtual event to celebrate and inspire excellence in consumer partnership in research. Uniquely, excellence will be defined from the consumer perspective.

There will be 6 awards, so hopefully there is something for all the consumer partners and consumer-supportive subscribers to this newsletter to consider entering or nominating someone for, from early Feb:
• Excellence in Consumer Partnership in Non-Commercial Research
• Excellence in Consumer Partnership in Industry-Funded Research and Development
• Excellence in Consumer Partner Capacity Building
• Excellence in Research Participant Experience
• Outstanding individual consumer impact on Health and Medical Research
• Outstanding Consumer Advisory Group Impact on Health and Medical Research

Over the summer, the Steering Committee will be nutting out the Judging Criteria for these awards ahead of entries opening early February.

With today's SAVE THE DATE announcement, we also launch the opportunity to SPONSOR this event (see the invitation and prospectus). Sponsors will be critical for making this inaugural event a success. Confirming sponsorship before Entries open will give organisations the greatest exposure for their investment. Please reach out if you are interested in standing beside us to help champion and celebrate excellence in consumer partnership in research, and inspire others to these heights.

We also open the opportunity to express interest in participating in a judging panel for one of the Awards. EOIs for judges will close on the 3 Feb, about the same time that we expect to open the Awards Portal for Entries. Keep an eye on the webpage which will be continuously updated over the coming months as we progress together the Awards on the 12-13 August.

When we asked CCReW through our Facebook group what they wanted early this year, it was a conference for them, about them. We hope these Awards will help deliver a celebration worthy of shouting about. We have alot of people to thank for their contributions to this Event so far, including the Steering Committee and a broader group of Event Helpers and Supporters. Hopefully you might equally engage as sponsors, nominators, nominees, judges, and/or attendees over the course of 2025 with #CPIR2025Awards.

The CPIR Awards are not the only networking opportunity I have planned for 2025, but more on that in the next newsletter, as I've probably overwhelmed you enough ahead of Christmas.

I will be working hard to make 2025 a year of positive energy and change in the consumer engagement and involvement space, and welcome the opportunity to walk alongside any of you also working to move the mountains of talk to walki n involving consumers in research, whilst recognising andcelebrating the pockets of excellence that do exist here. I will be taking a break now as much as possible until mid January, so if you do send me an email, I might be a little slow to respond during this period.

So all that's left from me for now is to wish you and your loved ones, a happy, safe, blessed, Christmas season, however you celebrate and rest. And if Christmas is not a happy time for you, then please know our Facebook community is there anytime you need it. Until 2025, wishing that you keep well and that life is kind to you. Merry Christmas, and safe and happy holidays.

Janelle, AccessCR and the CCReW initiative

The following is a list of trials from ANZCTR listed as having started recruitment between 6-18 Dec 2024 (as at 19Dec). For more details, click on the links to access the specific trial information.

Cancer

A First-in-Human Study of BG-C137, an Anti-FGFR2b Antibody Drug Conjugate, in Participants With Advanced Solid Tumors. NSW, QLD, VIC.

Musculoskeletal

A Comparison of Kneeling Ability After Lateral or Midline Incisions In Total Knee Arthroplasty. WA

Infant

Laryngoscopy for neonatal and infant aIrway management wIth supplemental oxygen. WA

Other

An Open-label Phase ½ Study to Assess the Safety, Efficacy, and Cellular Kinetics of YTB323 in Relapsing Multiple Sclerosis.

Note we have no connection/involvement with any of the above studies. Please click the study link and scroll to the contacts section for whom to reach out to for more inormation. If the trial is not running near you, ask the researchers if there are other options or travel support available. We'd love to know if you make enquiries and join one of these studies. And if you have difficulty reaching the research team, please let us know that too.

If you are a sponsor or researcher that wants to let people know about your newly opened study, please complete our request form or contact us (it's free to list a trial once).

See below for opportunities and events we've spotted which may be of interest to CCReW:

The Australian Clinical Trials Education Centre (A-CTEC) are looking for feedback from users in this15-20min survey that closes 24Dec.
Science for All are seeking people (consumers) with lived experience of cardiovascular disease, including coronary artery disease, stroke and atrial fibrillation, to work with them on a research project about genetic risk and disease and prevention. In the first instance it is support a grant application due early Feb. As such, they are seeking Expressions of Interest (EOI) in joining the Stakeholder Reference Group. For questions, or to submit your EOI, please email Jack.Nunn@ScienceforAll.World by 6 Jan 2025. In your email to express interest, in no more than 200 words, please outline why you'd like to be involved, any experience you have relating to cardiovascular disease (for example, a person with lived experience of cardiovascular disease, a carers or family member).
Nominations for the 2025 NHMRC Biennial Awards are open until 31 Jan. This include a Consumer Involvement Award.
CT:IQ are seeking feedback on a draft paper for human research ethics committees to guide HRECs around ongoing communication post consent with trial participants and their support networks, and what might/might not need approval, For more information and to provide feedback by the 1 Feb, visit the Beyond The Form website.
Consider applying to be a judge in our Australian Consumer Partnership in Research 2025 Awards. Learn more and apply here by 3 Feb. You can also review our sponsor invitation and prospectus online, if you'd like to help show your support for consumer partnership in research. Confirming sponsorship before Entries open will give you the greatest exposure for your investment.
The international Made with Patients 2025 Awards celebrate individuals and initiatives advancing patient engagement in healthcare, and are open for nominations until 14Feb. (No, these are the not the awards we are planning for later 2025, but still a good opportunity to raise the profile of great initiatives in healthcare :) )
National Health and Medical Research Strategy is being developed. A survey to capture reactions on the development of the strategy is now open. Visit this webpage to submit to the survey by 28 Feb.
ISPEP (International Society for Patient Engagement Professionals) have launched a pilot program to offer a select number of patient organisations free membership to ISPEP. Learn more about the conditions online and get in quick! (Note for transparency, Janelle is an ISPEP member).

Do you have an event or opportunity for consumers related to research you'd like to share in our newsletter? Please complete our request form or contact us. It's generally free to list unless it involves alot of time on our part to sort out.