The latest Australian clinical trials and ways to get involved in research.
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AccessCR-CCReW News and Opportunities 28Mar2023
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I don't know about you, but it feels like Easter has come around really fast, and as a result, everyone is trying to get feedback before the holidays. If you didn't catch last week's newsletter with 5 important events/consultations happening over this week and next, you can catch up here. I'm involved in all of them in some way or other, so that means talking to lots of CCReW about how they organise themselves (register here to contribute to this paid market research), hosting today's ARCS Consumer Partnerships meeting where CT:IQ spoke about their project to improve trial participant information forms, and driving to Canberra to attend the Parliamentary Friends of Womens Health morning tea tomorrow as one of the supporters of the #NavigatingHealth initiative. My interest in this collaborative is in ensuring that navigating research is made easier and embedded as a key aspect of navigating health. So, that's why this newsletter is a bit late today!

Post last week's newsletter, I've had some people indicate they would like to discuss the ACTA draft recommendations for increasing participation of people from culturally and linguistically diverse backgrounds in clinical trials with other consumers. So I've set up a Zoom meeting Mon 3Apr 7.30-9pm to enable that discussion. Sorry it's so late in the day, but trying to avoid everyone's work hours, family dinners, and squeezing it in before Easter is a challenge. If you are a consumer interested in attending that meeting, please register online. Registration will give you the Zoom link and make sure I have everyone's email, in case an outcome of the meeting is the need for further follow-up. I'd be grateful if you could share the registration information, rather than sharing the link, to make sure I don't run out of room in the meeting.

If you are interested in how health data is going to be collected and managed in order to inform the quality and safety of our healthcare system, I'd really encourage you to take a look at attending the Commission's consumer consultation meeting happening 5 Apr, referenced in the last newsletter. I think the new framework being consulted on has considerable implications for both primary and secondary use of health data, so it is really important health consumers are across the changes being proposed. The official consultation on the new framework for clinical quality registries closes this Fri 31 Mar. However, the Commission are providing additional time for consumers that attend this meeting to respond, to ensure consumer perspectives are taken into account.

Next week, I also hope to open up the next round of CCReW scholarships, which will provide travel support for 2-3 people to attend the ARCS Conference in Sydney on the 6-8 Jun. In the meantime, if you think you might like to apply for one of the CCReW scholarships, make sure you apply to ARCS by 14 Apr for a chance to be awarded a free consumer registration scholarship. Not sure if you would want to go? Then check out what some of the consumers said about attending last year's ARCS conference.

There's lots happening, and I will leave it up to you to check out other opportunities below. So given the Easter Bunny will have hopefully visited before the next newsletter, I want to wish you all a safe, happy time celebrating Easter according to your own faith and family traditions.

Until we meet again, may the world to be kind to you.

Janelle, AccessCR and the CCReW initiative

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 14-28Mar23 not previously listed here, as at 28Mar23.

Please contact researchers directly through the listings as we have no connection/involvement with these studies. If you do contact a researcher or join one of these trials please drop us a note so I know whether providing this listing is useful and helping people find trials.

If you are a researcher that wants to tell people about your recruiting trial, please contact us (first listing free, subsequent listings for a fee).

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

  • A Patient Focussed Medicine Development working group have developed a Fair Patient Engagement (PE) Planner, a co-created tool to facilitate good practices in defining patient engagements and empower open and transparent dialogue on fair remuneration for activities between the patient community and the pharmaceutical industry. This tool operationalizes the harmonised Global Remuneration Principles. For testing the tool, they are assembling a piloting and implementation community. This informal community will meet quarterly for one year, starting shortly after the launch of the Fair PE Planner in April. PFMD have asked me if there is interest in an Oceania chapter testing the tool. If you think you or your organisation might be interested in being involved, please drop me an email.
  • Check out the ACSQHC consumer consultation meeting 5 Apr, 7pm on health data registries, ACTA's consultation on their draft recommendations for increasing participation of people from culturally and linguistically diverse populations, and our current paid market research in the last CCReW newsletter.
  • If you are a consumer interested in attending AccessCR's informal discussion of ACTA's draft recommendations Mon 3 Apr 7.30-9pm Sydney time, please register online.
  • VCCC Monday Lunch Livestrean: Health system challenges and responses. 3 Apr, 1-2pm. In this presentation, Professor Stephen Duckett describes some of the key contemporary challenges of health policy and discusses what might be some of the barriers to addressing them. Register online.
  • St Vincent's Hospital Melbourne are looking for volunteer lay /community members to join their Human Research Ethics Committee (HREC). For more information, including a position description, check out this post on LinkedIn. (Shared at their request).
  • Flinders Health and Medical Research Institute is looking to recruit consumer members to their newly established Consumer and Community Reference Panel (CCRP). If you are interested, please contact
  • Spotted elsewhere and thought you might be interested in this WECAN survey:
    "What are your experiences regarding legal and compliance interactions between pharmaceutical companies and patient organisations? Please complete our survey and help us find out how all parties involved can ensure that meaningful patient engagement can take place supported by adequate and reasonable legal agreements for pharmaceutical companies engaging with patient advocates. We would also like to hear from you about whether you have been using WECAN's Guiding Principles or Reference Agreements, and your feedback on them. The survey only takes 10 minutes of your time, you can find it here:"
  • Australia’s National Science and Research Priorities and National Science Statement will provide direction for our science system. The Govt are seeking your views on refreshing the priorities to reflect Australia’s ambitions and challenges. Submissions close 31Mar23.
  • ARCS are inviting applications from consumers interested in free registration to their annual conference, 6-8Jun in Sydney.  Learn more and apply here. Deadline for applications: 14Apr23.

Do you have a consumer research involvement opportunity or event you'd like to share in this newsletter, or would like to engage our help or advice on an activity, then please contact AccessCR.

Here's a few resources you might be interested in:

  • The MRFF Consumer Reference Panel’s (CRP) Principles for consumer involvement in research funded by the Medical Research Future Fund (MRFF) are now available.
  • ‘Learning and growing together’: exploring consumer partnerships in a PhD, an ethnographic study. A new publication by one of our Facebook group with some really interesting insights.
  • Public reporting of clinical trial findings as an ethical responsibility to participants: a qualitative study. It's great to see some new published evidence supporting what we hear so often - participants want to know trial results!
  • This preprint is a fabulous read, and I recommend everyone take a look: Reflections on Patient Engagement by Patient Partners: How it can go Wrong
  • A-CTEC Inaugural Annual Conference 2023: Recordings and slides of the inaugural meeting titled "Clinical Trials – Quality or Quantity" held 2-3Mar are now available online.
  • OHT Learning Series - Session 4 - A great session on leaning into the challenges of engaging with consumers in research, particularly conflict and difficult conversations.
  • The South Australian Health and Medical Research Insitute have a fabulous Consumer Engagement Community of Practice with membership from across Australia. They recently shared links to their 2022 meetings, and I'd encourage you to check them out. To learn more about the community of practice, contact Shyamsundar Muthuramalingam via email:
    • 18/02/2022: SA- For the love of community engagement. Ms. Becky Hirst, Principal Consultant, Becky Hirst Consulting. YouTube Link
    • 18/03/2022: Co-development of Consumer Engagement Toolkit and Consumer Engagement Action Plan- VCCC. Dr. Joanne Britto, Manager, Consumer Involvement, Victorian Comprehensive Cancer Centre Alliance Vimeo link
    • 20/05/2022: Overview of the TrialHub at Alfred Health and its consumer ambassador program. Dr. Anne Woollett, Director, TrialHub, Ms. Rebecca Mclean, Consumer Ambassador Program Coordinator. Vimeo Link
    • 17/06/2022: Plain Language Summaries- Practical tips on development and dissemination.
    • Dr. Kelly Lambert, Academic Program Director for the Nutrition and Dietetics Program at the University of Wollongong. Vimeo Link
    • 15/07/2022: How to use Social Media to Facilitate Consumer Engagement in Health Service Improvement. Dr. Louisa Walsh, Centre for Health Communication and Participation at La Trobe University. Vimeo Link
    • 19/08/2022: Building capacity of health consumers and researchers to support consumer involvement in health and medical research: Are we there yet?. Ms. Carrie Hayter from Health Consumers NSW and Associate Professor Angela Todd from Sydney Health Partners. Vimeo Link
    • 16/09/2022: Consumer – codesign projects from Stroke Foundation. Ms. Saran Chamberlain, Young Stroke Project Coordinator. Vimeo Link
    • October: HTSA Spotlight Series: Consumer Engagement Webinar. Consumer Engagement webinars
  • 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. You can also check out our webpage sharing some key resources for involving consumers in research.

Help us spread the word and get more people involved in research.

Help speed up and improve research by sharing this newsletter with your family, friends and colleagues and letting them know about the research looking for participants and consumer research partners. If there is anything we can do to improve the newsletter, please get in touch.  

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Hear about consumer involvement opportunities, events and resources first, or get involved in conversations about research by joining our private facebook group - Research Gamechangers.

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