News Nov18
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     Founder Update
Today represents a year since we launched the online Research4Me community, and what I consider the official launch of Research4Me. Though we 'closed' the online community a few months ago in favour of a Facebook Group, we are looking at re-launching that space early next year once its EU GDPR (privacy) compliance is sorted as a way to be able to concentrate discussion and interests within particular groups, projects and themes.

What we are doing now has evolved from our ideas of a year ago, and those ideas continue to twist and turn as we learn more about the people we aim to serve. It's quite the journey figuring out how to become sustainable, and best help more people, I am so thankful for the generosity of those we've met to share their stories, ideas and experience with us.

The past 6 months have presented lots of personal challenges with illness and deaths in my close family. So I need to say thankyou to everyone for their patience with 'apologies for the delay, life has gotten in the way' emails which I feel I've sent too often this year. I remain more committed as ever as to the need for a community like Research4Me, and I have some big, bold ideas for the year ahead I hope you will be a part of.

I would like you, our community of patients, carers and committed research professionals, to be a part of shaping those plans and as such, I'll be pulling together a committee in the next couple of weeks to help steer those plans. I will be tapping a few people on the shoulder, but I also welcome you to contact me if you are passionate and want to put your hand up to be a leading voice for change in this space. As always, watch our social media for opportunities to get involved.

I have oft been reminded lately how 'life' can get in the way of even the most noble of intentions. So, why would people with lots going on in their lives have time to get involved in research? Making it easier and less burdensome to involve people and get them involved has to be a number 1 priority. I look forward to continuing the conversation with both the public and researchers as to how we can do that together. No-one has resources to waste, and I believe there is a way we can work together to leverage each others efforts and learnings to achieve more.

Getting people involved in research starts with telling people what the opportunities are to do something, whether that be as participants, or as contributors, partners, collaborators, reviewers, etc (whatever your chosen word). That's why we remind researchers and industry of the free opportunity we provide EVERY Tuesday night from 5-10pm to share what you need patients and carers to help with or participate in in our Facebook Group,

We'll be at the ACTA conference 29-30Nov and hope to connect those of you who share our common interest in consumer engagement in research. Don't forget, if you are a patient/carer, you have until Friday 23 Nov to apply for our free ticket to attend. Please share this opportunity with those you think might like to go, as we really don't want a consumer to miss this opportunity to further develop their understanding of the clinical researh environment, learn how they can get involved, and mix with the researchers hoping to change lives for the better, even if only for a little while.

Till next time... Janelle.
In case you missed our Latest News.....  

As of today, our blog and news are now conveniently placed in the one spot on our website - Latest News.  And in case you missed some of the stories of the last month, here's a quick recap...

We published interviews this month to share the experiences of those involved in a research workshop where consumers were brought in to help analyse the data. In a series of 3 posts, we spoke with Dr Mary Dahm, the researcher that held the workshop about how she did it and why, as well as two of the consumers that attended, Maureen and Ben, who spoke about their experience as health consumers and why they got involved in this research.

We shared the opportunity to go to the ACTA clinical trials conference in Sydney next week, In case you missed it above, find out here why you might want to go and how to apply for the free registration - due by Fri 23 Nov, midday.

And one of our community, Reina S. Weiner shared her thoughts on why clinical trials matter to her. Reina has participated in 4, so she is speaking with the voice of experience.

We've also been talking to others, so keep an eye out this coming Sunday and Monday for our next 2-part story speaking with a research team member and consumer contributing to the ENDIA study, Australia's largest study into the cause of type 1 diabetes.

Here's 10 articles we thought you might find interesting:

  • Should you enroll in a drug trial? This article covers off some high-level information about the process of going into a clinical tria. WE always advocate that people should ask about clinical trials, but then decide on a case by case basis, whether those trials are right for them. In our view, it's better to be able to make informed decisions about your choices for care, than to miss out on potential options.
  • The intention to develop Australia’s first National Rare Diseases Framework and Action Plan has been announced by the Department of Health. This should be encouraging news to many of our community that have an interest in rare diseases.  
  • Kindness matters – Debra Letica, Consumer/Carer Representative. In this wonderful piece, Debra talks to how she become a consumer representative and the kindness that is necessary to build confidence and trust in relationships. It doesn't speak specifically to being a consumer rep in research, but they are wise words for anyone looking to be a health consumer representative or engage with health consumers.
  • A Patient's Journey To Join A CAR-T Cell Therapy Trial. Nicole Gularte, co-founder of The Inspired Heroes, a group of cancer survivors who are advocates, speakers, and consultants, talks about her path to a CAR-T Cell Therapy Trial, and why she now advocates every single child who is diagnosed with cancer should have access to CAR-T therapy as a first line treatment.
  • Research waste is still a scandal—an essay by Paul Glasziou and Iain Chalmers. The authors have been long-time advocates for calling out and reducing waste in medical research. This article provides a summary of what's been done, with more yet to do. At Research4Me, we believe getting patients involved in research can help reduce research waste by ensuring "...better research, and research done for the right reasons."
  • How Facebook and Twitter could be the next disruptive force in clinical trials. Participants in medical research are more empowered than ever to influence the design and outcomes of experiments. Now, researchers are trying to keep up.
  • How a simple ‘thank you’ could improve clinical trials. This really is a no-brainer, and the minimum level of respect and courtesy researchers should show to those that participate in their research. The fact that it required an article in Nature speaks to the need however to draw attending to this basic courtesy. Now that the 'evidence' exists, its up to researchers not doing it to get 'implementing'.
  • A Questionnaire Survey on Awareness of Clinical Trials Among Medical Students. This was a small US study, but demonstrated how little understanding those in medical college have of clinical trials. Given clinicians are the gatekeepers of the information given to patients, we believe it is critical they have an understanding of clinical trials and can support their patients in finding and evaluating the ones that are right for them.
  • Recommendations for the design of small population clinical trials. A question came up in our community about how trials are done in rare disease and the role of registries. So we thought this article might be interesting to both those in the rare community, but also researchers who will grapple with increasingly smaller population sizes as genomics starts to impact the definition of disease conditions and hence target populations for their research.
  • Advertising for clinical trial recruitment cannot take a one-size-fits-all approach. We are often asked for the silver bullet that can be applied to all patient engagement. We don't believe there is one, and researchers need to understand the group they want to engage with. Unsurprisingly, when it comes to trial recruitment, the same principle applies.

This is a list of trials on the ANZCTR listed at currently recruiting in Australia, with a start date of 11Oct-22Nov18:

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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