CCReW Research News 26Jul24

I'm currently reflecting and planning at the moment around how AccessCR will support CCReW over the next 12 months in terms of activities and advocacy. Alot will be shaped by the discussions currently active in our Facebook group, so do contribute if you haven't already. Much already fits with what I'd like to do around developing CCReW pending resources to do it. I think that's going to lead to some interesting activities I hope you might get involved in. One plan includes developing a CCReW advisory group (and potentially some other groups) in coming weeks, so stay tuned to our socials for those opportunities to help shape or contribute to those activities.

Aligned with our #ptinclusiveconf advocacy, some work I (and others) did with the Health Services Research Association of ANZ 18 months ago to make their conference more patient inclusive has been published. Hopefully this encourages other conference organisers to consider what the value of engaging with patients in their conferences is, and elements they could ideally incorporate.

I've been tossing around with some of our consumer network some ideas for abstracts for the National HREC conference in November (due next week). In doing so, I created a poll in the facebook group about the following question: "Do you think HRECs are too risk adverse, and while well-meaning, that overprotection can reduce access or lead to a less satisfactory experience for trial participants?". It was only a small poll with n=17 responding, but the response pictured below (11 'yes's and 6 'sometimes' ) has me wondering about what people think might need tweaking in the HREC process to help improve access and participant experience.

You might have heard that funding was announced in the last budget to progress plans for a Clinical Trials One Stop Shop. But what actually is this all about? Well, early September, I'll be hosting a webinar for consumers with Dr Bernadette Aliprandi-Costa from the Department of Health who has graciously agreed to answer consumer questions about this initiative and other clinical trial related activities. Keep your eyes on our socials for more information on registering for this webinar soon, and let us know if you have any burning clinical trial related questions you'd like to explore with the Dept.

Also in September, I'll be a panellist alongside a couple of other well known Australian consumer advocates for the 'You Can't Ask That' session at the end of Day 3 (Sep 13) of the PxP conference - by patients, for patients. Registrations have opened this week for this free conference and Day 3 is timed especially for our timezone. I encourage all our networks to register. If last's years conference is anything to go by, this year will be another cracker event.

For now though, I'll let you catch up on everything else the newsletter has to offer. Until next time, I hope that you keep well and that life is kind to you.

Janelle, AccessCR and the CCReW initiative

The following is a list of trials from ANZCTR listed as having started recruitment between 20May-28Jun24 (as at 28Jun). For noting, due to technical difficulties at ANZCTR, trials pulled from clinicaltrials.gov are not available this month. I will include those trials next newsletter, assuming ANZCTR has fixed the search issue. For more details, click on the links to access the specific trial information.

Cancer

BrainPOP Precision: Implementation of precision medicine into the care of patients with brain cancers. VIC.
A pilot randomised controlled trial assessing feasibility, acceptability, preliminary efficacy and cost-effectiveness of RecoverEsupport Breast: A Digital health intervention to support breast cancer patients in their preparation for and recovery from surgery. NSW.

Infections + Vaccines

A Study to Evaluate the Efficacy of SRS-MHT-44 against Long COVID in Adults Aged 18-65 Years. WA.

Heart Related

Effect of a patient centered toolkit as part of the discharge process on re-presentations following admission for heart attack. SA.

Musculoskeletal

A feasibility study evaluating the role of Immersive Virtual Reality mindfulness in mitigating acute exercise-induced pain following exercise in chronic low back pain. QLD. An online study of an oral supplement combination in knee osteoarthritis. ACT, NSW, NT, QLD, SA, TAS, WA, VIC.

Infant/Paediatric/Adolescent

Wait a Minute or More: A pragmatic stepped wedge cluster randomised implementation trial assessing a quality improvement program to increase delayed cord clamping for preterm infants. ACT, NSW, NT, QLD, SA, TAS, VIC, WA, VIC. [AccessCR note: Recruiting hospitals first, then infants at those hospitals]

Healthy volunteers

A Phase 1 study of oral ZKN-0013 or placebo given randomly to healthy volunteers to evaluate the safety, tolerability and the amount of drug in the body after drug administration. VIC.

Other

Caring for Caregivers: An Antenatal Wellbeing Program. SA.
Evaluating educational interventions to support safe use of ChatGPT for health: a randomised-controlled trial of ChatGPT users. ACT, NSW, NT, QLD, SA, TAS, WA, VIC.
Promoting haemostasis for central venous access devices: a comparison of Statseal products with standard dressing care in adult inpatients to assess impact on dressing failure. [AccessCR note: haemostasis is the natural process the body uses to stop bleeding]. NSW, QLD.
Exploring the impact of hormonal contraceptives on the treatment of claustrophobia in women. NSW.

Sponsor requested listing (no fee)

A Phase 3 Study of Lebrikizumab (LY3650150) in Participants 6 Months to <18 Years of Age With Moderate-to-Severe Atopic Dermatitis. NSW, QLD.

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).

The following are some upcoming opportunities and events spotted that may be of interest:

Researchers at the University of Newcastle are seeking people who have completed colorectal cancer treatment in the last 5 years, and currently have high blood pressure, high cholesterol, type 2 diabetes, an unhealthy weight or diet or poor sleep, to participate in some workshops (online or in person) to design a lifestyle intervention for colorectal cancer survivors. For more information, per the image on the right, please visit the website, or email mitch.duncan@newcastle.edu.au or call (02) 4921 7805. Remuneration is on offer.
The University of Adelaide is seeking Stroke Survivors' ‘Lived Experience' of pain after stroke and your experience with mind- body therapies. Click here for more information shared by Brian, one of our Research Gamechangers community.
Contribute to a survey being run by researchers at Macquarie University aiming to reach a consensus on a set of statements to guide cancer systems, services and policy makers about how to enhance participation of culturally and linguistucally diverse consumers in their consumer engagement activities.
Join our Facebook group and let us know on the featured post what support you think CCReW (consumers taking part in research and/or partnering with researchers) most need right now.
It might be a long shot, but if you are a patient with significant interest and involvement in health data systems/sharing, it might be worth a crack applying for a scholarship to attend the Health Datapalooza conference in Washington 16-17Sep. Applications close 29 Jul, 5pm ET.
Join NSW Health for the July Conversation in Human Experience with David Gilbert and Liz Newton about the Patient Leadership Revolution. Online 30 Jul 3-4pm AEST.
Nominate yourself for one of the new Joint NHMRC-MRFF Advisory Committtees and NHMRC Principal Committees. Nominations close 5PM AEST on Wed 31 Jul.
The Inquiry into Women's Pain is asking Victorian girls and women to share their experiences of pain and pain management. You can participate by making a written submission or completing a survey by 31 Jul.
Provide feedback (if based in WA) on the Health Consumers Council WA Member and Stakeholder Survey to help shape their future activities. Survey responses due by 31 Jul.
Submit an abstract for the National HREC Conference to be held online 27-29Nov. Submissions close 1 Aug.
Submit an abstract to the Luminescence Alliance conference 7-8 Nov in Sydney to support the theme 'Paediatric Precision Medicine: Advancing research and patient care' by 1 Aug.
If you work in (or have worked in) health and medical research professionally, consider taking part in the national audit of the Health and Medical Research Workforce being conducted by the Dept of Health and Aged Care. The survey closes 9 Aug.
Attend Health Translation Queensland’s ‘Intro to Consumer and Community Involvement in Health Research webinar’ 12 Aug 12-2pm online.
Participate in an Health Consumers Council WA ‘Advocacy and Activism Workshop’ on Wed 14 Aug, 3-6:30pm WST in-person at Health Consumers’ Council in Mount Lawley, Perth OR online via Zoom.
Register to attend a webinar hosted by CHF titled 'Consumers in research: what's our role?' online 22Aug, 1-2.30pm AEST.
Monash Health Partners are seeking health consumers living or working in south and sount-east Melbourne active in their community with an interest in research and improving health outcomes, and from different language and cultural backgrounds, for a consumer advisory panel on increasing consumer and community involvement in research and healthcare improevement. See more online. Applications close 30Aug.
The NSW Office for Health and Medical Research has developed the Clinical Trials Register of Staff (CiTRoS), to capture the current Australian clinical trials workforce. If you work in clinical trials in any capacity, you are asked to complete the CiTRoS survey and invite your colleagues to do the same by 30 Aug. For additional information, please contact clinicaltrialsNSW at clinicaltrialsnsw@health.nsw.gov.au
ACTA are seeking abstract submissions for their December 2-4 Clinical Trials and Registries Symposium. Submit by 9Sep.
Register free for the PxP (For patients, by patients) Virtual conference to be held online 10-13 Sep (depending on your timezone). This is sure to be a highlight if last years event was anything to go by. (PS, I'll be one of the panellists along with some other well known Australian consumer advocates you can ask questions to in the final 'You can't Ask That' session on Day 3).
Attend Health Consumer Council WA free 'Introduction to Consumer Representation Training' either inperson 18 Sep or online 25 Sep.
Contribute feedback on one of a number of TGA consultations currently happening, for example (but not limited to): Reforming Australia's Therapeutic Goods Testing Regulations (closes 18 Aug) or Future regulation of assistive technologies (Closes 13 Oct).

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. Iit's generally free to list unless it involves alot of time on our part to sort out).

Here's a few other bits and pieces you might like to engage with:

Need some statistics on Australia's health to support your health condition specific advocacy? Check out the latest report from AIHW - Australia's Health 2024.
Looking for information created by consumers for consumers to explain clinical trials? Check out the newly revitalised ConViCTioN website. (For transparency, this is a group we help support).
Check out NSW Regional Health Partners new website - Doing research, together. Lots of fab food for thought and resources for researchers, consumers, carers and health workers to support them to co-design and co-deliver medical research.
Review outputs from a recent webinar: The Impact of Sharing Clinical Research Data: Insights from Sydney Health Partners and the NHMRC Clinical Trials Centre.
Listen to the podcast episode: Engaging Youth and Families: A Practical Discussion with the CHILD-BRIGHT Network
Settle into a comfy space for some light(ish) reading:

Embedding Patient and Health Care Professional Voices in Clinical Trials JAMA 1Jul24
From vulnerable subjects to research partners: a critical policy analysis of biomedical research ethics guidelines and regulations. Res Ethics Mar24 (In the context of paediatric research specifically).
BMJ Editorial: World leaders unite to embed social participation in health systems
Susannah Fox on LinkedIn: Wow! How? Patient-Led Biodesign
Research ethics preparedness during outbreaks and public health emergencies: Focus on community engagement. Res Ethics May 2024
A US-based small survey on Patient attitudes toward participation and use of digital technologies in clinical research. Do you think the results would be the same in Australia?
An article examining the challenges pharmaceutical companies face in implementing patient-reported outcomes (PROs) in cancer clinical trials as outlined in the FDA’s draft guidance and proposes collaborative ways to fully embrace the use of PROs in cancer trials.
Janet L Wale & Dominik Hamerlijnck, Apr24: Perspective Chapter: Patient Advocacy - From a Seat at the Table to Equal Stakeholders
Viewpoint, JAMA Jul24: Embedding Patient and Health Care Professional Voices in Clinical Trials
BMJ Jul24: The patients bringing lived experience to research teams
BMJ Open Jul24: Patient engagement in a Canadian health research funding institute: implementation and impact