For anyone that missed the PxP conference, it was another great event (and thankfully not too many tricky questions at the end for Anne McKenzie and I to answer). I thought I'd share one of many pertinent quotes I saw shared by @PxPHub on X from the event to the right. You will be able to catch up on recordings for all but the question sessions at the end of each day, and I highly recommend it for anyone interested in the burning issues for consumers involved in research.  Keep an eye on the PxPHub and @PxPHub X account for when these are released.

I am currently investigating holding a virtual conference with awards celebrating excellence in consumer/patient experience, engagement and involvement in Australian research and clinical trials (from the CCReW perspective) sometime in the first two weeks of May 2024. I am looking for CCReW that might like to be part of a steering committee to help shape that event. If that's you, please get in touch as soon as possible. Equally, if you might be interested in partnering in or sponsoring such an event, I'd love to talk to you too!

Though this might seem slightly left field, in case you missed it, the Health Technology Assessment (HTA) Review consultation Report and Enhance HTA Report (reporting on the consultation on the co-design of an enhanced consumer engagement process for HTA) were released mid September.  I share this here, as the recommendations could help strengthen the need for consumer involvement in research and development. In particular, I was heartened to see in the first report "Recommendation 25. Improving the involvement of consumers in HTAs" which says: "Actively engage consumers across the HTA continuum, including by offering support and training. Update the Pharmaceutical Benefits Advisory Committee Guidelines to request information from sponsors of HTAs about how they engaged with consumers during pre-HTA processes including clinical trial design." Let's watch this space for how the government responds to both of these reports.

If you follow me on LinkedIn, you might have seen my support for a newly establishing International Society for Patient Engagement Professionals (ISPEP). Emma Sutcliffe in the UK is the founder, and is currently building the platform for the group, which should be available by the end of the year. In the meantime there is an active WhatsApp group. Look up Emma Sutcliffe on LinkedIn for more information, and message her if interested in ISPEP.  Coincidentally, I am also partnering with a colleague, Cathy Sertori, Creative Advocacy Solutions, on something for Australian industry professionals with an interest in patient partnership, so stay tuned for more on that.

Tomorrow is the start of October, and I am launching for the second year our October Origami 4 Clinical Trials (O4CT) campaign. We would like to encourage you to purchase origami sunflowers (to make, or made) to gift to clinical trial participants from the CCReW shop, to say thankyou for their efforts and contributing to advancing healthcare. We know from those who have already purchased, what a smile they receive from those that are gifted the sunflowers. If you're looking for that different type of team bonding or mental health break, why not purchase multiple packs to make or book a workshop. We have lots of ways these sunflowers can help bring people together and provide an opportunity for discussion around clinical trials.  And if Origami or Sunflowers aren't your thing, then look at the other offerings available on the CCReW Shop. We'd really love your support.

Sometimes I have a need for a bit of mindfulness myself, and so I make some origami sunflowers. Occasionally, people will purchase or give us origami sunflowers they've purchase and made to distribute to trial participants. To facilitate knowing who to give these too, we've now launched a page on our website where people can nominate a trial participant to be gifted a sunflower (including self-nomination), OR they can nominate a trial site we can send origami sunflowers to for gifting to their trial participants. Learn more about requesting this gifting on the CCReW Website under CCReW Support - only subscribers to this newsletter are able to make these requests, as a little thankyou for being engaged with us.

As part of this year's O4CT campaign, I am going to gift an origami sunflower to a trial participant for each day of the month (ie 31 origami sunflowers!). So please get requesting, and purchasing!

Finally, but definitely not the least, we have opened a CCReW Conference Travel Scholarship round, for consumers needing support to attend a conference before the end of the year. Applications close 9am, 18 Oct. It is short notice, but we've noticed how few conferences coming up are still helping consumers with costs, and want to do our last little bit before Christmas to support more #ptinclusiveconf. For more details about what's on offer and eligibility, please visit the CCReW Scholarships webpage.  I would love to offer more scholarships in 2025, and are once again looking for corporate or individual sponsors (CCReW Believers) that would like to be recognised for their efforts to support consumers get involved in research. Please reach out if your organisation would like to be involved.