CCReW News 18July- Australia

Dear

In a couple of hours I'll be hopping on a plane to Melbourne to attend the SCRS conference tomorrow as a panellist in a session on engaging with diverse communities in clinical trials. I have really enjoyed chatting with fellow panellists about different perspectives on this issue and look forward to the conversation. I plan to provide a bit of a summary of thoughts about the issue in a blog post later in the week, so keep your eyes peeled for the update on our socials.

Before the conference however, I am looking forward to a casual CCReW meetup tonight over dinner in Melbourne. If you are interested to come at late notice (at own cost), please drop me an email ASAP so I can adjust the dinner booking (6.30pm at a venue in Federation Square).

Remuneration of consumers for their time in involvement activities has once again come up recently in our Facebook group. Though I can't make it, it would be interesting to listen to the discussion Health Consumers NSW will be having online tomorrow (see below) about the NSW Health consumer remuneration guidelines.

I will be watching with interest what happens with the launch of Health Data Australia today. This is a new national asset that has come out of the Health Studies Australia National Data Asset (HeSANDA) node projects which aims to make sharing and requesting access to data from health studies (clinical trials) easier. There is a lot of potential for new research insights, but I have also expressed concerns about the level of consumer consultation about this. I’d be interested to know what our community thinks about the concept. Feel free to join the conversation in our Facebook group.

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 3-17Ju123, as at 17Jul23.

Muscle growth and anabolism in intensive care survivors. This blinded, randomised, placebo controlled phase 2/3 study running at 3 hospitals in Perth is looking for 60 people aged 21 years or older, admitted to a participating intensive care unit at least 5 days and receiving nutrition at estimated goals for at least 24 hours OR significant weakness below patient’s baseline as a result of the ICU stay.
A study to examine the comparative exposure of N-Acetyl-D-Mannosamine Monohydrate (ManNAc) when administered orally as a solution and two novel tablet formulations in healthy adult males. This open-label, randomised, three-arm crossover study running in Adelaide is looking for 6 medically healthy males aged 18-59 years.
Feasibility of an intervention for Debilitating Symptom Complexes Attributed to Ticks (DSCATT) – an Acceptance and Commitment Therapy (ACT) based transdiagnostic approach. This randomised, blinded, waitlist-controlled pilot and feasibility study recruiting nationally (and based in Melbourne) is looking for 120 people aged older than 17 years with access to telehealth facilities and meeting the case definition for Debilitating Symptom Complexes Attributed to Ticks (DSCATT).
Evaluating an online quality improvement tool developed for family day care to promote healthier nutrition and physical activity practices. This open-label, randomised controlled, educational study running in NSW is looking for 12 currently approved NSW family day care service providers developing or undergoing a review of their quality improvement plan or educators aged 18 years or older.

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:

Clinical Trial Data Unlocked for Research with New National Platform. For the first time in Australia, researchers can find clinical trial data from multiple research institutions and request access to it via a new platform, Health Data Australia. The initiative will be launched 18Jul 1.30-2.30pm AEST. Register to attend online or in person at SAHMRI here.
Health Consumers NSW are holding an online consumer forum on Wednesday 19Jul at 10am to further discuss topics raised with respect to the NSW Health Consumer, Carer and community members' remuneration guideline, published in April 2023. Register for the online discussion here.
Council Victoria is establishing a 1:1 phone-based per support program for people considering participating in a trial, and their friends and family. They are currently seeking volunteers aged 18 years or older who have participated in a cancer clinical trial and can commit to online induction training and 12 months in the role to provide peer support to thoe considering a cancer treatment clinical trial. Please email Sophie.Thompson@cancervic.org.au if interested in more details.
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
Monash Partners Webinar 20Jul, 1pm: Involving consumers in discovery research - reflections and learnings. Register online.
The National Ageing Research Institute (NARI) of Australia is currently leading an international project titled Accounting for diversity: Culturally and linguistically diverse (CALD) data variables in health and medical research. The ultimate aim of the project is to make Randomised Clinical Trials (RCTs) more inclusive of ethnic diversity to improve equity outcomes. The immediate objectives are to develop recommendations for the collection & reporting of data about ethnicity, and to develop CONSORT and SPIRIT extensions.
NARI is seeking individuals who are well versed in any aspect of data collection, analysis or reporting for clinical studies to take part in two rounds of a global Delphi survey.
The first round of the Delphi survey is open until 21 Jul. Please consider taking part by opening the following link to access further information or to start the survey: https://www.surveymonkey.com/r/QBNW9LR
Consultation on a CIOMS Draft report (due 24Jul 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.
VCCC Alliance webinar 27Jul 1-2pm: Advancing sarcoma research through clinical trials. What does the future hold for clinical trials in sarcoma research? What's next for ANZSA? Join us for a webinar answering the big questions, with a particular focus on the unique challenges faced by sarcoma patients in accessing clinical trials. Register online.
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: 31Jul.
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.
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 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:

The updated Australian National Statement on Ethical Conduct in Human Research 2023 was published at the end of June. It will be effective from 1 January 2024.
Health Consumers NSW has recently published a Statement of Aims for driving consumer partnership in helath search design, delivery and evaluation, developed by the Consumer Leaders in Health Collaborative.
Did you know there is an International PPI Network: Learning Live webinar series? (PPI stands for Public and Patient Involvement (it's a UK term)).
The Academic Health Research Alliance (AHRA - an umbrella group for all the Academic and Health Translation Centres around the country) recently released their annual AHRA impact report, and it provides updates on their Community and Consumer involvement activities.
A Thoughtful Approach to Patient Inclusion in Publications. A blog post with a few useful reminders on being more inclusive of the consumer voice in medical writing.
Monash Partners and Sydney Health Partners recently ran an excellent webinar on "Consumer and Community Involvement in Clinical Trials: Reaching people from migrant and refugee communities for clinical trials." The recording and summary have now been released, if you'd like to catch up.
Consumers and health providers working in partnership for the promotion of person‐centred health services: a co‐produced qualitative evidence synthesis has been published in the Cochrane library.
The recent Monash University ‘Meaningful partnerships with mental health consumers and carers’ webinar recording is now available.
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.