Community Newsletter Oct2018
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With the release of our Think Tank report in August advocating for ways to increase the accessibility of information for Australians looking for clinical trials, our time has been freed up to concentrate on collecting and sharing more stories of patient involvement in research, and preparing for moderating a panel discussion at the upcoming #TRX18 conference in Brisbane on the 26th October. (See below for more details and an exciting opportunity for our community members to go along).

We've also had the opportunity to meet a few more research teams looking to involve more patients and carers in their research. As a result, we are currently working on a partnership model for 2019 to help increase knowledge, networking and capacity amongst interested research groups and patients, carers and related organisations.

Please get in touch if you are interested in discussing how we can partner together to increase community participation and involvement in research, and develop both the consumer and researcher workforces to work together.

If you haven't already, why not join our Facebook Group. This is a safe place of like-minded people for asking questions, and sharing thoughts, events & information about medical and clinical research. And if you are a researcher looking for research participants or people to get involved in your research, remember you can share your medical research and consumer involvement opportunities each Tuesday night via this group. It's free, just make sure your HREC has approved it.

Please feel free to contact me anytime if you have suggestions for the type of help or content you are interested in seeing from us.

Till next time... Janelle.
2 Free Tickets to #TRX18. But be quick.  

We are always advocating for the public to be more involved in research. So when we were invited to moderate a session at the Translational Excellence conference in Brisbane (#TRX18) talking about the development of therapeutics and the growing influence of patients in this area, we were keen to make sure there were patients not only on the panel, but in the audience.

So, putting our money where our mouth is, we are offering to pay the registration fee for 2 patients/carers that are members of our community with an interest in getting more involved in research, to attend the day. This is a bit of a last minute idea, so you don't have long to apply with applications due by the 18Oct18.

If you are free 26 October, and able to make your own way to attend the conference in Brisbane, please apply. And if you are a researcher working on a project, or in a research organisation/network with Brisbane-based consumers involved in what you do, please let them know about the opportunity. If people aren't already part of our Facebook group and volunteer database, then they are welcome to join to be eligible for this opportunity. We'd love to see and meet some friendly faces from our community at TRX18.

Find the full conditions and links to apply on our website. Remember, applications close 18Oct18, so don't delay!

Dr Mary Dahm shares her experience running a workshop to get consumer input in her research analysis  

We love learning from researchers involving consumers in their research, and most importantly, hearing how they do it. We believe sharing these stories is one way to help research teams build the confidence and ideas for how they might go about it, since we also believe there is no one-sized fits all approach that will work for every type of research or every therapeutic area.

Dr Mary Dahm, a researcher at the Australian Institute of Health Innovation, Macquarie University, recently spent an hour talking with us about a workshop she held in July to get consumer input into the analysis of some qualitative research they had conducted relating to management of hospital test results.  She generously allowed us to share her insights and experiences which you can read in detail on our blog. We'll be following up shortly with similar posts from two of the consumers that attended Mary's workshop to learn more about their experience and why they got involved. So keep an eye out for those on our blog in the coming weeks.

If you are a consumer involved in research, or a researcher working with consumers, willing to share your experiences such that others may learn from them, please let us know. We'd love to profile your stories on our blog too.
Here's 10 thought provoking articles we've recently come across:

  • Developing treatments and helping future generations through breast cancer trials.  October is Breast Cancer Awareness Month. Fran Boyle, Professor of Medical Oncology at the University of Sydney, and member of the scientific advisory committee of international Breast Cancer Trials collaboration based in ANZ talks about the value of breast cancer clinical trials.
  • Patient Fears of Placebo Use in Clinical Trials. While this article is aimed at advising clinicians talking to patients about placebos in clinical trials, it is just as useful to patients looking to better understand why placebo's are used, and why you shouldn't necessarily fear them.

This is a list of Australian trials on the ANZCTR listed at currently recruiting, with a start date of 11Sep-11Oct2018.

Research4Me has no relationship with any of these projects and provides this information as a public service to increase awareness of the diversity of research needing participants. If you are interested in more information, please click the links and contact the investigators listed directly.

Get Involved.
Help change the game in health & medical research
Would you like to be contacted with opportunities researchers contact us directly about?
Do you have questions, research experiences to share, want to connect with like minded people, and/or want to help us create a community for answers, support and experience-sharing around public involvement and participation in clinical research?
Do you have a story to tell that others could learn from about being involved in health and medical research, or engaging the community in medical research? Whether its a diary, interview, video chat, photo collection, etc, we want to help you share your experience.
We are always open to feedback and suggestions, or organisations looking for support, collaboration, partnership with and learn from other individuals and organisations interested in engaging the community in health and medical research, especially clinical trials.
Please contact us at any time.

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