Five opportunities for input over the next couple of weeks
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Urgent CCReW Input Opportunities 23Mar2023
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This is not the normal CCReW newsletter - that will come out next Tuesday as usual. This is an extra-ordinary email highlighting five current opportunities with short timelines that I wanted to make sure everyone (especially health consumer organisations and health consumer representatives) are aware of, in case you want to get involved.

1. CCReW Market research - pre Easter

As highlighted last newsletter, I am currently reaching out to  trial participants and consumer research partners, either individually or in small group interviews of 30-60minutes, to understand how CCReW organise their research activities. There will be some compensation for the time involved. To learn more and register your interest in contributing, please visit the CCReW blog.

2. ACSQHC Consumer Consultation Wed 5 Apr, 7-8.30pm

The Australian Commission on Safety and Quality in Health Care (the Commission) have asked us to share and promote (pro bono) the following invitation to a consumer consultation on the revised clinical quality registries framework . Personally, I had not engaged with this particular consultation as I didn't think it was relevant to me/research. Having spoken further with the Commission team, I now think it is highly relevant to anyone who cares about how health condition specific treatment and outcome data is collected, stored and used to improve safety and quality of healthcare. I strongly encourage all health consumer organisations and interested health consumers to attend this consultation workshop specifically targetting health consumers to learn more this proposed changes and provide feedback. The invitation in full from the Commission is below. Please email the Commission if you are interested in attending.
The Australian Commission on Safety and Quality in Health Care (the Commission) is inviting you or nominated representatives from your organisation to participate in targeted consultations on the Framework for Australian clinical quality registries Second Edition (the Framework 2nd edition). 

There are many organisations that collect and hold information about the demographics, health status, treatments and outcomes achieved for different health conditions in what are called clinical quality registries. These registries are not necessarily connected and don’t necessarily provide information back to the health system that can improve the safety and quality of healthcare. A new framework has been proposed for collecting and using health data in a way that can support better decision making for health consumers and clinicians, especially for the 10 most costly health concerns.

This webinar will actively seek to inform consumers about the Framework 2nd Edition and seek their feedback on the proposed changes to how health data is used to inform safety and quality in health care.

The Commission is holding an online consultation session via WebEx on Wednesday 5 April 7pm to 8:30pm AEDT and would be grateful if you could kindly provide the contact details for your nominated representative to

Please find attached* a Summary Paper which provides the background to the project as well as the Framework 2nd edition, logical design and infrastructure and security compliance guideline, for your information.

National public consultations on the Framework 2nd edition and supporting documents will be open until 31 March 2023 however feedback will be accepted until 21 April 2023 noting the date of the consultation session.

For further information, please contact

                                           Kass Adams, Senior Project Officer

                              Tel (02) 9126 3630

I look forward to working with you on this important safety and quality initiative.
Yours sincerely

Dr Bernadette Aliprandi-Costa
Manager, Safety and Quality Improvement Systems and Intergovernmental Relations
Australian Commission on Safety and Quality in Health Care

* For noting, the attachments can be forwarded upon request, but are not able to be attached to this email. They are also available on the Commission's website.

3. ARCS Webinar Tues 28Mar, 12.30-1.30pm - Improving trial patient information and consent forms

ARCS is the professional association/development organisation for people working in the therapeutics industry. It has a consumer partnerships interest area that meets 3 times a year to talk about topics of common interest to consumers, research and industry, I am volunteer convenor for this group and meetings are open to everyone (though only free for health consumers and ARCS members).

The next online meeting is on the 28Mar 12.30-1.30pm and we will be discussing a collaborative project which aims to improve trial participant information and consent forms. This session will cover a summary of the project, feedback provided by consumers during 3 pilots of a new proposed template, and will actively seek input (particularly from consumers) on some outstanding issues. It is a great opportunity to add your input before these forms are launched for broader piloting by the clinical trials sector in June.

You need to register for the webinar at

If you are a health consumer, please email ARCS ( or myself for the discount code that will get you free registration. I really hope there will be a strong consumer and industry presence at this discussion, so please feel free to spread the word.

    4. ACTA draft consultation on recommendations to improve cultural diversity in clinical trials

    The Australian Clinical Trials Alliance (ACTA – an umbrella group for all the clinical trial networks and registries) is asking for feedback on a set of recommendations they are proposing to help improve the participation of people from CALD backgrounds in clinical trials.

    For transparency, I have been involved in the review of this document. But it is now absolutely essential that there is broader input into whether the proposed recommendations will make a positive difference, especially from the communities they are intended for.

    Please review the draft recommendations and provide input to ACTA by Monday, April 17.

    If any CCReW would like to discuss the draft recommentations as a group, please let me know before next Tuesday, and I will offer details for a Zoom meeting on Mon 3 Apr, 7pm in the next newsletter.  I will be away from Easter until Anzac Day, so can't hold the meeting any later.

    5. Parliamentary Friends of Women’s Health Morning Tea. Wed 29 Mar, 11am-12pm.

    Join the Parliamentary Friends of Women’s Health Morning Tea with co-chairs Peta Murphy MP and Bridget Archer MP. This event will be focussed on #NavigatingHealth: A solutions focused collaboration in healthcare. It is an in-person event, with an option to attend virtually via a provided link.

    Please register to attend online here:

    So that's it for this 'extraordinary' update. Please feel free to share these opportunities amongst your own networks. Wishing success and kindness come your way in the week ahead.

                                                            Janelle, AccessCR and the CCReW initiative

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