Latest Australian trials and research involvement news/opportunities.
 ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌
AccessCR-CCReW News and Opportunities 14 Sep 22
View this email in your browser

This fortnight passed so quickly it caught me by surprise this week that another newsletter was due. On my radar the last couple of weeks has again been advocacy around consumer attendance at scientific conferences, but also reflecting on community perceptions of clinical trials, and secondary use of medical and research data (and samples) for future research or healthcare purposes.

With respect to community perceptions of clinical trials, last Friday I had the opportunity to moderate a group conversation with 11 consumers diverse in culture, language, age, gender and location across NSW about clinical trials. Discussion included their perceptions, frustrations, benefits and what might be needed to improve interest and participation in trials. The insights were rich, and even as someone that chats with individuals regularly about these things, I heard new things. It reiterated my unwavering my belief that we really can't 'fix' clinical trials (e.g. recruitment) without partnering with consumers in developing the solutions.

And while clinical trials mean hope to many, there is clearly still much work to be done by the research community to build trust, cultural safety and a common language with the broader community around clinical trials.

Secondary use of data is a hot and challenging topic. We have so much medical and research data recorded everywhere, that it seems wasteful not to use it to better understand il inform and support research, spark innovation and improve/speed up diagnosis and care.  understanding the potential value of big data, there is alot of interest and activity happening around linking and harvesting insights from such data to ultimately improve healthcare. But have we stopped to think...just because we can, should we, can we, and what happens if we don't?

A discussion last week in our Facebook Group showed me there is still alot to unpack around who should have access to data and for what purpose, consent, and even whether we should be combining data sets that can be inaccurate and biased to inform research, practice and innovation? There really needs to be alot more discussion with the community about data ownership and use, and what there is social license for, to make sure we don't erode trust (and hence participation) in research.

As I wrap up this week, I did want to acknowledge the passing of Queen Elizabeth II. Whether you believe in royalty or not, there is much to admire in a life lived in devoted service to her community. May she rest in peace.

Until next time, may the world be kind to you.
                    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 29 Aug - 14 Sep 2022 not previously listed in our newsletter, as at 14 Aug 2022.

We provide the above trial listings as a free service to help people know what studies have recently started that they or someone they know could have an interest in. Please contact researchers directly through the listings as we have no connection/involvement with these studies.

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

We love to hear your stories as trial participants, consumers involved in research or the carers and family that help support people do either. It helps us promote your good works, uncover areas for improvement, and inspire others as to what is possible.

Our concept research participation experience survey is online for anyone that would like to record/note their trial-related experiences over time, as often as you'd like to, from looking for trials, to finishing up a trial. We also encourage researchers to offer it to their participants, if they don't have any other means of collecting their feedback. Once completed, responses are emailed back to the individual (not the research team), so that the individual can be share them if/when they feel safe and want to with a research centre. If nothing else, completing it is a great way for an individual to keep track of their own research experiences over time.

Alternatively, we are happy to receive stories by email, talk to you on the phone or a video call, or any other way you'd like to share your story with us.

Speaking of stories, I was reminded recently of a 2018 conference workshop I hosted in partnership with Health Consumers NSW where Jill and Lillian spoke about their experiences participating in clinical trials. It's a few years old, but the insights are still relevant and interesting. It's only 15mins, if you want to check out the impromptu video.

The following are some upcoming activities that have come across our desk that people may be interested in:
  • Thanks to the Australia-New Zealand Society of Nephrology (ANZSN), Australia and New Zealand Dialysis and Transplant Registry (ANZDATA) and Kidney Health Australia, there will be a consumers and carers workshop as a part of the ANZSN Annual Scientific Meeting, 16th October. There are 25 complimentary conference/workshop registrations to give away to people living with Kidney Disease and their carers. Complete the expression of interest form as soon as possible. More information is also available from Shyamsundar Muthuramalingam.
  • The Cooperative Trials Group for Neuro-Oncology are holding a Patient Education and Information Forum as part of their Annual Scientific Meeting in Brisbane, on 16th October. It's free, and tickets are available here.
  • The next Research Gamechangers FB Group online meetup for members is just around the corner on the 19th September. This month, the meeting is at 12.30pm AEST (instead of 8.30pm) to enable those less able to make evenings a chance to get together. Zoom details are available in the Group. (By the way, the group is open to anyone with an interest in consumer participation and involvement in research. Just complete the quick questions when you request to join, so we know you aren't a robot!).

If you'd like to proactively advertise a consumer involvement opportunity or event, then please get in touch for more information.

Check out AccessCR's clinical trials jargon buster and other resource available on our website's Knowledge page if you are looking for information and support around clinical trials basics, getting involved and asking your doctor about trials.
Have you taken part in or cared for someone in a trial or are a consumer involved in research (ie are part of the CCReW)?
Or, would you like to help support the CCReW?

Feel free to contact us anytime at Please share this newsletter with people that might have an interest in taking part in or sharing their experience with researchers to improve trials.

If you were forwarded this email and would like to subscribe to receive it each fortnight, click below.

If you have questions, want to discuss research participation or involvement issues, or have resources and involvement opportunities to share in between newsletters, feel free to jump into our Facebook Group, and email.

You are receiving this email because you subscribed to our newsletter or database. Unsubscribe

AccessCR Pty Ltd
Level 13, Suite 1A
465 Victoria Ave
Chatswood NEW SOUTH WALES 2067

Email Marketing by ActiveCampaign