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A little about what we're up to...

Research4Me is all about demystifying clinical trials so more people think about and have the opportunity to get involved in them. We believe it is much better to know about trials, and have the CHOICE whether to participate, than for you and your doctor to be unaware of the options and miss out on the choice to try something that might make a positive difference. So for Australia's National Science Week (12-20Aug), we prepared a post that The Consumers Health Forum of Australia published to explain some of the common misunderstandings about clinical trials.  
For a bit of fun, we took on the Science Week challenge to #EmojiMySci on Twitter, and created an emoji explanation for drug development, including the 3 pre-approval phases of clinical trials. What do you think?

Coming up Aug 24th, we're looking forward to hosting a panel discussion on 'The Role of Consumers in Developing New Therapeutics' at the annual ARCS Australia therapeutics industry conference. Thursday 17 Aug is your last chance to let us know you are a consumer involved in research that would like to attend that session for FREE. Even if you are not involved in research, but would like to be in the future, consider coming.

Sept 1st at 8am Sydney time, we're hosting the next #AusCT twitterchat on involving kids and young people in clinical trials. There is more information below. Please come along and join in the discussion.

The finishing touches are being made to the next version of our website, as well as our first workshop to help the public and research work together on their clinical trials. We'll be in touch with those that expressed an interest in this training via our website survey shortly with details. 

Our most important work continues learning from members of the public, patients and researchers about their experience of clinical trials. This feedback is crucial to making sure we deliver something that is actually useful, and is informing the development of our resources, website and trial experience surveys. Please complete our surveys, or email/message us via Facebook or Twitter to share your thoughts so we build something of value.

Until next time...
                                   Janelle Bowden, Founder, Research4Me
 
Have you completed our survey yet?

We want to understand your experience, whether you you have, or have not taken part in a clinical trial.
For your time, we will donate $5 toward one of 3 Australian organisations:
The Unicorn Foundation, The Sanfilippo Children's Foundation and Love Your Sister.


Upcoming Events

The  #AusCT twitterchat is an open opportunity for all the stakeholders of clinical trials to come together to discuss the issues. The next chat will discuss clinical trials involving children and young adults. It can be a touchy topic, but is just as important that these age groups can know what treatments will work for them, as it is for adults.



Join and follow the conversation at the following time on Twitter or Tweetchat.com using the hashtag #AusCT:
Sydney, Aus: Fri 1 Sep 8am
Adelaide, Aus: Fri 1 Sep 7.30am
Perth, Aus: Fri 1 Sep 6am
Auckland, NZ: Fri 1 Sep 10am
Los Angeles, US: Thurs 31 Aug, 3pm
New York, US: Thurs 31 Aug, 6pm
London, UK: Thurs 31 Aug , 11pm
Brussels, Belgium: Fri 1 Sep, 12am

For the transcripts of previous chats, visit our website.


Trial Spotting

There are many different types of clinical trials. As examples, here are 5 of the 25 trials listed as started in the last month on the Australian New Zealand Clinical Trials Register. Please visit the links and contact the researchers directly if interested in these trials, as we have no links with any of these trials.


What We've Been Reading...

Here's a selection of the stories we've enjoyed reading recently that talk to explaining clinical trials and participants experiences in them, as well as the value or public and patient involvement in research and development of new treatments. Feel free to share with us other stories you think this community might enjoy via our Facebook page, or by tagging us on Twitter (@Res4Me).

Trials: ‘We knew it was a totally at random thing’: parents’ experiences of being part of a neonatal trial
Summary: An interesting article exploring feedback from parents about being on a trial for their newborns.  Almost all parents were positive about their experience and felt that the family had benefitted from participation in the trial and follow-up studies, even when the developmental outcomes were poor. 

CHF of Australia: Promoting consumer involvement in medicine decisions welcomed
Summary: Consumer leader, Jo Watson, has been appointed as the inaugural deputy chairperson of the Pharmaceutical Benefits Advisory Committee, the committee in Australia that recommends which medicines the government should subsidise. This is great recognition of the value of involving patients in decision making processes around new medicines.

NPSMedicineWiseHow medicines are approved for use in Australia
Summary: This is a nice explainer for the public on how medicines are developed, and eventually get approved and onto the market in Australia.

FDA BlogFDA Sets Inaugural Meeting of First-Ever Patient Engagement Advisory Committee
Summary: For the first time, the FDA (the US agency that oversees development and approval of new therapeutics in the US) will have an advisory committee to focus on patient-related issues. The goal of committee is to better understand and integrate patient perspectives into the FDA's oversight, to improve communications with patients about benefits, risks, and clinical outcomes related to medical devices, and to identify new approaches, unforeseen risks or barriers, and unintended consequences from the use of medical devices.

CenterWatchSurvey: Discussions about clinical trials should be part of standard of care
Summary: Research!America conducted a US public opinion survey which found the majority of Americans (86%) agree that healthcare professionals should discuss clinical trials with patients diagnosed with a disease as part of their standard of care. The survey also revealed how attitudes to clinical trials in the US are changing.

WTHR: Art exhibition celebrates clinical trial participants  
Summary: This is a story about the unveiling of the second #HerosJourneyArt piece in the US that celebrate those involved in clinical trials. (For noting: Janelle had the opportunity to contribute a brick back in March in which she wanted to make sure Australia was included in one of these sculptures.  She doesn't claim to be an artist!)

EMAEMA encourages tailored development of medicines for older people
Summary: Just as younger people can have different needs or process medicines differently, so can older people. And yet, they are not always included in clinical trials. The European Medicines Agency has a discussion paper out for comment on making sure medicines are suitable for older people as well.

AppliedClinicalTrialsConsiderations on Layperson Trial Summaries in the EU
Summary: In Europe, it will be mandated that when trials are reported, a summary hat is suitable for the public should be produced. This article looks at why this is happening, and what should be included in those summaries.

MethologicalStudyResearch priorities for Patient and Public Involvement in Clinical Trials
Summary: Though Research4Me believes there is value in involving the public more as partners in clinical trials, there is much that is still not known or published about how to do it well and its benefits. We came across this project prioritising the research that is still needed with respect to public and patient involvement in clinical trials.

Research InvolvementGRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research
Summary: The way the public and patients have been involved in research projects to date is inconsistently reported. This paper provides a long and short checklist with the types of information the authors think would be useful to report, to improve consistency.

AppliedClinicalTrialsPatient Centricity: Buzzword or Paradigm Shift in Clinical Research?
Summary: Paulo Moreira, vice president and head of global clinical operation—external innovation at EMD Serono, discusses how successful clinical development lies in bringing together the principles of scientific merit with the needs of patients. “One cannot exist without the other.”

NIH Documentaries: First In Human
Summary: First in Human is a 3-part documentary capturing the real-life experiences of doctors, researchers, staff, patients and their caregivers involved in clinicaltrials at the NIH Building 10. So far, only part 1 has been on, but we still thought we'd highlight it.
We hope you have enjoyed the August Newsletter.  

Please share it with anyone you think might find it of value, sign up if you didn't get it directly, and let us know if you have suggestions for improving the newsletter.
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