CCReW News 4July- Australia

It was great to see lots of commentary on LinkedIn and our Facebook group about the consumer experiences at the recent HTAi conference in Adelaide. It is so important to have informed health consumers in the spaces where discussion around process and priorities are happening, whether it be in research, medicines/medtech/technology development and health technology assessment. Congratulations to all the sponsors that helped support the travel and involvement of consumers in that conference.

Over the next week, I am turning my mind to the current consultation on how best to handle research funding managed through the National Health and Medical Research Council Medical Research Endowment Account (NHMRC MREA) and Medical Research Future Fund (MRFF). I am keen to make sure the health consumers in our community help inform the submission AccessCR will make. So if you would like to join an informal discussion on Wed 5 July at 12pm AEST (Sydney time), drop me an email and I will send you the Zoom link. As an aside, CHF will also be holding a webinar about this consultation on Thursday 6 July which you can register for online here. And there are recordings of Govt webinars on the consultation, on the consultation website.

There are lots of other events, opportunities, activities and resources listed below, so check them out. And until we meet again, here's wishing 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 6-21Jun23, as at 21Jun23.

Effect of Personalised Music Therapy on outcomes for hospitalised patients with dementia. This non-randomised, open-label treatment study running in Sydney is looking for 91 people aged 65 years or older with a diagnosis of dementia, and neuropsychiatric symptoms of dementia with or without delirium.
Clinical Observation, Management, and Function Of low back pain Relief Therapies (COMFORT). This cluster randomised trial running in NSW is looking for both 40 general practices with patients who have low back pain, and 410 patients aged 18 years or older with low back pain prescribed an opioid analgesic by the participating GP.
Clinical Trial assessing the safety and feasibility of major soft tissue abdominal resections using the da Vinci Xi surgical robot. This surgical, non-randomised, open-label single group treatment study running in Sydney is looking for 20 patients aged 18 years or older deemed suitable for robotic resection of a range of pathologies (see full listing).

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 free, subsequent listings for a fee).

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

SAHMRI:Consumer Engagement Forum | Home and Peritoneal Dialysis. 4Jul 1.30pm (Register online).
To optimise the government’s investment in health and medical research, the Department of Health and Aged Care and National Health and Medical Research Council (NHMRC) are undertaking national consultation to improve alignment and coordination between the Medical Research Future Fund (MRFF) and Medical Research Endowment Account (MREA). Submissions close 14Jul. AccessCR hopes to make a submission and welcomes consumer input to our submission through an information discussion on 5 July, 12pm AEST if. Please email for teh Zoom link if interested in attending.
Health Issues Centre are hosting two community conversations in July 2023 with people who have used non-emergency patient transport services, their carers and supporters. It will involve attending a two-hour online meeting on one of the following dates and times: Thursday 20 July 10.00am-12.00pm or Tuesday 25 July 2.00-4.00pm. Participants will receive $90 payment for sharing their perspective – places are limited! Expressions of interest close Wednesday 12 July.
Consultation on a CIOMS Draft report (due 14 July on form referenced in the report) on real-world data and real world evidence in regulatory decision making. This draft report discusses the strengths and limitations of RWD sources, their foreseeable development, scientific considerations for deriving real-world evidence (RWE) from them, as well as ethical and legal perspectives.
The KidsTrial (based in Ireland) are looking to recruit children from all over the world to be advisors in their research. the Twitter post says to message them for information
Sydney Health Partners Annual Forum 2023 - Aligning Research, Adding Impact will be held 19 July. Register online.
#ANZDATA has multiple Consumer Representative opportunities (for those with lived experience of kidney disease) within our newly established Consumer Advisory Panel (CAP). Please register your interest at community@anzdata.org.au
Monash Partners Webinar 20Jul7, 1pm: Involving consumers in discovery research - reflections and learnings. Register online. (This was first posted in
Consultation on a CIOMS Draft report (due 24 July on form referenced in the report) on the benefit-risk balance for medicinal products. This draft report proposes a structured framework for benefit-risk assessment at every stage of a product’s lifecycle.
The #dedoc° voices scholarship program grants diabetes advocates access to some of the world’s most renowned scientific conferences. Applications for EASD & ISPAD 2023 are now open. Application Deadline: 31 July 2023.
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 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.

We all know participation information sheets and consent forms for clinical trials need improvement. 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).
The U.S. FDA is proposing to require a more concise type of Medication Guide, called Patient Medication Information (PMI), for prescription drug products. A PMI would be a one-page document with standardized format and content. Patient Medication Information —Comments invited until 27 November 2023

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

Personal data in biomedical research Jun23 https://doi.org/10.1177/14782715231175001
Commitments for Ethically Responsible Sourcing, Use, and Reuse of Patient Data in the Digital Age: Cocreation Process. JMIR May25
Patient and public involvement in cancer research: A scoping review Cancer Medicine Jun 23
Engaging Patient Partners as Peer Reviewers of Grant Applications: Tips for Everyone Involved IMHA-Blog, Jun23
Marie Curie Research Centre Public Involvement in Research Impact Toolkit (PIRIT)
From Idea to Impact: Strengthening PPI Through Training and Accreditation UniOxford Jul23
“What’s going on, I feel a bit wobbly?!”: Crafting power dynamics at a public involvement event NIHR Blog Jul23
Engaging and actively involving the public with non-clinical research Blog Jun21
A square peg in a round hole: Patient and public author affiliations in academic journals IMHA-Blog, May23
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.

We're passionate about ensuring every Australian is aware of the opportunities available to them to make a difference through their participation in and contributions to research. So please share and recommend this newsletter and if Facebook is your thing, get involved in our Facebook group for real-time discussion. And if you have any feedback that can help us improve the usefulness of this newsletter, please get in touch. Together I hope we can help speed up and improve medical and clinical research.