CCReW News 16Aug23- Australia

I also have a quick thanks to everyone that is engaging with the newsletter. 45% of you opened the last newsletter, so I am guessing that means it might be somewhat useful. However, I don't want to assume anything. I'd like to ask for 2-5mins of your precious time to get some feedback about the newsletter from you, including information about your willingness to pay for it. The last thing I want to do is to create an expense for our consumer audience, but I also have to think about how to do this sustainably. So your feedback on this survey is incredibly important (and can be provided anonymously).

When you scroll down today, you might be surprised to see just one study listed as opening for recruitment in the past couple of weeks. I too am very surprised by this! Given the 2021 MTPConnect report suggested that over 1800 trials started in Australia in 2019, it seems unlikely that only 1 trial opened for recruitment in the last fortnight. Either resourcing at ANZCTR has become almost non-existent, the ANZCTR and its search aren't functioning properly, or researchers and sponsors are not using/updating ANZCTR or adding Australian sites to clinicaltrials.gov. Honestly, how are people supposed to find trials! I will be probing my professional networks about this issue, but if you have any insights, please do let me know. And in the meantime, as always, if you have a newly recruiting trial, consumer involvement opportunity/event or useful resource you'd like included in the newsletter, please reach out via email or the CCReW submission form. And if you are looking for a trial, I am here to help.

To that end, after the last newsletter, Clare from the Spinal Research Institute (SRI) asked us to share with our community their Consumer Remuneration Policy, as another example of remuneration guides additional to those on our website. Per their recently published paper, "The SRI Policy for Consumer Remuneration sets a standard for the SCI research ﬁeld, which can serve as a model for Australia and as a template for other countries."

The 4th National HREC Conference is on 29Nov-1Dec. There is a call for abstracts that closes 1 Sep. (I'm wondering if there is a topic I should submit on behalf of CCReW, so let me know if you have suggestions and would like to co-create an abstract together).

Coming up, I'm looking forward to contributing to webinars with Patient Voice Initiative (Aug 24) and the ARCS community (Aug 29) about topics relating to patient partnership, so I hope you will register for those. And there are lots of other things to get involved with listed below.

So with that I'll say... Good luck to the Matilda's tonight (yes, it had to rate a mention), and until we meet again, here's wishing you keep well and life is kind to you.

This is a list of all studies on the ANZCTR approved by a human research ethics committee, recruiting in Australia, with a trial start date between 31Jul -16 Aug 23, as at 16Aug23.

Proof of concept study of RECCE®327 topical anti-infective therapy for mild skin and soft tissue diabetes foot infections. This Phase 1/2, open-label, randomised controlled treatment study running in Liverpool, NSW is looking for 32 people aged >18 years with either type 1 or type 2 diabetes mellitis and newly diagnosed (<14 days) mild skin and soft tissue diabetes foot infections.

For noting, if you are interested in a study, and it is not running near you, please contact the researchers in case there are other options or support with travel to participate.

Please contact researchers directly through the listings as we have no connection/involvement with these studies. We'd love to know if sharing these research studies is useful, so please drop us a line to let us know if you contact researchers about them.

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 (first listing of a study/event is free, repeat listings for a fee).

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

Invitation for public submissions: Australian Clinical Guideline for Physical Rehabilitation and Mobilisation in Adult Intensive Care Units. Monash University has released the new guideline recommendations for public consultation ahead of seeking NHMRC approval of them. Submissions close Friday 18Aug.
VCCC Webinar 21Aug 1-2pm: Ethics and biobanks. Biobanks have great potential in advancing population health research by enabling access to biospecimens that can be linked to health data. In this webinar, a multidisciplinary panel featuring Clinical Ethicist, Professor Clare Delany, will explore the opportunities and challenges of linking biospecimens to health data in health research through the lens of ethics and consumer rights. Register online.
Researchers from the University of Melbourne are inviting people with any experience or knowledge about whole genome sequencing as a consumer/patient, clinician/health professional, industry member, health economist, or policy maker to complete a 15-minute survey by 21 Aug - Understanding preferences to the reimbursement of whole genome sequencing (genomic testing) in blood cancer.
CHF are holding a Consumer briefing on the Draft National Consumer Engagment Strategy Monday 21 Aug, 2 pm AEST, (SA and NT 1:30 pm, WA 12:00 noon) (Nb, Consultation listed below closes on the 4 Sep).
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.
Scholarships are being provided by the Centre for Cancer Education for students, individuals with lived experience (consumers), nurses from metro and regional partner organisations, and other professionals within VCCC Alliance member organisations to attend the 2023 VCC Research Research Conference. This will get consumers 50% off the advertised rate ie cost for the 2 days to register = $162.50. Applications close Mon 28Aug, 9am AEST.
The University of Sydney's Health Literacy Hub has a Zoom webinar on Health Literacy, Disability and Written Health Information (28 Aug 11am-12pm AEST).
ARCS Consumer Partnerships Interest Area webinar 29 Aug, 12.30pm AEST - discussing consumer involvement in preparing communications across the therapeutic lifecycle. Research and industry professionals can register online. Consumers can request free access to attend by emailing arcs@arcs.com.au
The International Progressive MS Alliance, in collaboration with MS organisations across the world, is conducting a global 10min survey to find out how people affected by MS feel about being involved in research – including being an author of scientific publications. The survey is available in 8 languages: Arabic, English, French, German, Italian, Polish, Spanish and Swedish. Deadline 31 Aug.
Consultation on the Draft National Consumer Engagement Strategy For Health And Wellbeing: The purpose of this Strategy is to mobilise a person-centred prevention system by involving communities and consumers in preventive health policy design and implementation in order to enable and support a more engaged population and improved health outcomes for all Australians. Consultation closes 4Sep23.
Join the second of the 2023 ARDC Leadership forums to hear thought leaders discuss trusted research environments (TREs) for sensitive health and medical data. 5 Sep, 2-4pm AEST.
The 3rd revision to Good Clinical Practice (the international guideline for the conduct of clinical trials - ICH E6(R3)) is currently open for global consultation. Though there is no specific Australian consultation deadline, there is the ability to contribute to consultations being undertaken by other regulatory agencies, with deadlines ranging from late Aug – Oct. Learn more by clicking here and navigating to E6-Good Clinical Practice, then E6(R3) EWG on the drop down menu .
The 4th National HREC Conference is on 29Nov-1Dec. There is a call for abstracts that closes 1 Sep. (I'm wondering if there is a topic I should submit on behalf of CCReW, so let me know if you have suggestions or want to prepare an abstract together).
The HTA Review Reference Committee have 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.
The NHMRC is reviewing the 2013 Australian Dietary Guidelines to ensure they reflect the best available evidence. We invite stakeholders including members of the public to submit high-quality systematic reviews for selected diet and nutrition related topics. Submissions close Fri 1 Sep.
AccessCR would love your feedback on the CCReW newsletter - what works, what doesn't and would you pay for it. Survey open until 6 Sep.
Medicines Australia are hosting their annual event, PharmAus, on Wed 6 Sep at Parliament House in Canberra. This year's theme is 'Partnering for Future Health' and will build on the significant health reform agenda of the current Government, focused on accelerating access to medicine and ensuring stronger collaboration with the patient community.
The Australian government are seeking feedback on the draft recommendations to come out of their Diversity in STEM review. This review is about increasing the diversity of people WORKING in STEM. But, I have included this here as I believe increasing workforce diversity in health and medical research is a critical for enabling and encouraging more diverse people to participate in research. If you'd like to respond to this particularly consultation, feedback is due by 8 Sep.
The University of Sydney's Health Literacy Hub has a Zoom webinar on Health Literacy, Disability and Health Communication (12 Sep, 1-2pm AEST)
The VCCC are holding a comprehensive cancer conference in Melbourne 12 - 13Sep. Today, they have announced there is a discounted consumer rate of $325 for 2 days, $225 for 1 day.
Attend the #PXP23 free virtual conference 12-15 Sep.
The World Health Organization (WHO) has invited comments on its draft guidance on best practices for clinical trials, which was produced at the request of the World Health Assembly as part of last year's Resolution WHA75.8 on Strengthening clinical trials. The deadline is 15 Sep.
The Patient Engagement Open Forum 2023 (PEOF) are holding an online event 4 Oct, 1.30-3am AEST on “How can we foster publications on Patient Engagement (PE) initiatives?’. Register online.
The University of Sydney's Health Literacy Hub has a Zoom webinar on Health Literacy, Disability and Face-toface Health Communication (10 Oct, 1-2pm AEST)
For the first time, Australian women are invited to share their experiences in the health system to better inform policy development and improve health outcomes for women and girls. An Australia-wide community consultation project has begun to understand the personal experiences of bias in the health system. Anyone can take part, including patients, health providers, researchers and other stakeholders. The survey closes 13 Oct.
2023 WCG Online Patient Forum 26 Oct, 3-6am AEST. Listen to the voices of patients, their families, caregivers, patient advocates, and health care professionals, sharing their trial experiences and stories regarding a range of issues in clinical trials.

We all know participation information sheets and consent forms for clinical trials need improving. Provide your feedback on the beta-testing versions of a new potential Australian template, developed through a CT:IQ project, available at www.informedpicf.com.au. Consultation is open until the end of the year.
CT:IQ is currently asking for feedback from researchers about how they communicate wtih their trial participants throughout the research. (Consumers will be asked in the near future about their experiences of communication in trials, so stay turned).

Here's some other news and resources you might be interested in:

Australia’s Chief Scientist, Dr Cathy Foley, has released a new Trust in Science paper. Trust in Science outlines the elements of quality science, describes the systems that underpin and support quality science in Australia, and discusses the distinction between ‘integrity’ and ‘quality’.
The Office of Health Technology Assessment’s Consumer Evidence and Engagement Unit conducted the Conversations for Change consultation series during September 2022 to March 2023. The Conversations for Change Report has now been published.
A step-by-step guide to peer review: a template for patients and novice reviewers. BMJ Health & Care Informatics, 2021
Community members’ experiences training as medical journal reviewers. Res Involv Engage, Aug 2023
Working together in health research: a mixed-methods patient engagement evaluation. Res Involv Engage, Aug 2023
Co-design and its consequences: developing a shared patient engagement framework in the IMI-PARADIGM project. Sci and Public Policy, Aug 2023
World Patient Safety Day 2023 will be observed on 17 September under the theme "Engaging patients for patient safety", in recognition of the crucial role patients, families and caregivers play in the safety of health care.
MRFF Report on funding for rural, regional and remote health research - shares information on the MRFF support for rural, regional and remote health research, its impact, and opportunities.
Report: Evaluation of the MRFF Clinical Trials Activity - outlines the findings of a formal review of MRFF investments in clinical trials, approaches for clinical trials here and overseas, and ways to improve funding and granting arrangements
TrialForge are developing an online tool/pathway for include more diverse participants in clinical trials. Check it out here.
AccessCR's clinical trials jargon buster and Knowledge page for information and support around clinical trials basics, asking your doctor about trials, helping clinicians with information on trials and more. Check out our latest webpage sharing resources for involving consumers in research.