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From our founder....

2017 is coming to a close and that's when everyone gets a little reflective about the year just gone. I could go through what Research4Me has done, but I think past newsletters can provide that for anyone interested.

What I would like to indulge in though is a wish of thanks to the many that have informed our journey this year, participating in our surveys, projects, the development of the website and more. I am constantly amazed at the generosity of time and advice that has been shown to me with a view to helping Research4Me succeed. To the many that have been instrumental in helping us develop, I am entirely grateful.  Research4Me is still very much a fledgling growing its wings, but it is only still here because of your encouragement and help, and I look forward to what we might achieve together in 2018.

On that front, we have a couple of events planned for early next year I'd like to give you the heads up about.

The first is a VERY exciting event we hope to run with a number of partners on 8 April as part of a team in a global clinical trial awareness competition. It will be a world first if the team pull it off, and we hope as many current and former clinical trial participants as possible will be able to be in Sydney on that date to be involved.  Look out for the event announcement in mid February. In the meantime, if you are passionate about raising awareness of clinical trials in the community, and have project management, social media, communications, marketing, event planning, media, etc skills or contacts, are tapped into large networks, would like to contribute funding to help support non-Sydney trial participants travel costs to attend, or you are interested in hearing about other ways to support/sponsor the event, please get in touch as soon as possible so you can help shape the event or make the most of the publicity we hope to generate. 

The second event relates to solving the problems people have finding clinical trials in Australia. In quarter 2, 2018 we hope to bring those having difficulty finding trials together with those that provide various registers and solutions for finding trials in Australia to see if we can find a better way forward. In preparation for this meeting, we have a survey on our website collecting feedback on how Australian patients are currently finding clinical trials, and what they think the perfect clinical trial search tool would do. I'd love you to share your experience in the survey, and if you are interested in contributing to the discussions at the meeting, please email us.

For the next couple of weeks we will be trying to enjoy a little time with family, so may not immediately respond to emails. Please join the community, and continue to provide us with any feedback or suggestions you have, so we make sure we are delivering something useful.

Until we meet again in 2018, I wish you a restful, happy break over Christmas.  Stay safe and healthy.

                      Best regards, 
                      Janelle, Research4Me

                                
Current Opportunities

We currently have open a number of surveys to understand:
  • The experiences of those that have never taken part in a trial around clinical trials
  • The experiences of those that have taken part in a clinical trial
  • The experience of searching for trials and what the ultimate trial search tool would do.
All our opportunities to get involved are listed on the website. Join up to contribute to these surveys, or help answers the questions posed by us or other community members on the community forums.


Trial Spotting

Each month we try to demonstrate the diversity of clinical trials by showing 5  clinical trials on the Australian New Zealand Clinical Trials Register currently looking for participants. Please visit the links provided and contact the researchers directly if interested in these trials, as we have no further information about or links with any of these trials.
Join Our Community Online

  
 
  • Have you ever wondered what a clinical trial was?
  • Are you considering or taking part in a trial and wish you could connect with others to ask questions?
  • Would you like to contribute in some way to improving or designing trials that were better suited to participants?
  • Are you working in research, want to involve people in your work, but not sure how?

The Research4Me online community provides a way to connect with others to inform your clinical trial journey from awareness to participation to collaboration and advocacy, or your research practices around patient and public involvement in clinical trials.

It's free for individuals to join for non-professional purposes, so find out more today and start getting connected and involved. 
 


What We've Been Reading...

Need some holiday reading? Here's 10 articles relating to clinical trials and public and patient involvement in them we found interesting in the past month. 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).

News Article: The 'nocebo' effect could be making you feel sick when you're not
Most people are aware of the placebo effect - the potential that you will feel better with a dummy procedure/pill/device, even though it is not active. Did you also know there is an equivalent effect when you think the medication's going to make you worse-off called the nocebo effect.

Magazine ArticleClinical Trial Reporting for Pharma-Sponsored Trials Shows Improvement
The Good Pharma Scorecard finds some big pharmaceutical companies are meeting legal standards for disclosing results—but many studies still go unreported.

Blog PostA Salute to the Unsung Medical Heroes of Clinical Trials
Who are the people that take part in clinical trials and what is being done to educated the public about clinical trials? Kenn Getz from US Non-profit CISCRP shares some thoughts.

Blog PostTaking part in clinical trials – Tommy’s story
Tommy Brennan, 65,  tells his story of being diagnosed with cancer and joining a clinical trial, on the Cancer Research UK blog.

Blog PostIn-Depth: The rise of the digital clinical trial
We believe technology has the potential to increase access to clinical trials, collect different types of information from participants, and reduce burden for participants. This article takes a nice look at the history of attempts to move to site-less, digital trials, and the current state of play and possibilities.

Blog Post: The Making Of A Patient Advocate For The Clinical Trials Enterprise
A patient advocate shares their experience of their journey to become more deeply involved in clinical trials and what is needed to support the development. We hope the Research4Me platform might become a useful place people can share their experiences and support each other in not only taking part in trials, but taking it to the next level and being advocates and collaborators in clinical trials.

Company News: The Clinical Trial Registry of the Future
Just as we started talking locally to some patients about how to advocate for a better trial registry/search too, Transcelerate, a non-profit collaboration of pharmaceutical companies, released some materials they had produced from a series of iterative design workshops to co-create our Clinical Trial Registry of the Future concept in partnership with patients. We'd be interested to know what you think of the videos and concepts proposed.

Journal ArticleTessa Richards: Patient and public involvement in research goes global
This piece in the British Medical Journal explores the progress toward greater patient and public involvement in research and the launch of an international network for public involvement and engagement in health and social care research.

Journal ArticleMy Clinical Study Experience with Parkinson’s Disease. The patient voice
The wife and carer of a person with Parkinson's Disease talks about the experience of their husband in a clinical trial, and the need for carer's to speak up and be noticed, if the carer's are struggling.

News articleNew report reveals insights into clinical trials in Australia
A new report reveals Australia ranks in the top tier of national clinical trial activity with more than 10,000 clinical trials conducted between 2006-2015, with cancer the most frequently studied health issue.




 
We hope you have enjoyed our last Newsletter of 2017. Merry Christmas.  

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.
The Research4Me Nov17 Newsletter has been released information on out new community for clinical trials, and public and patient involvement in trials.
Research4Me Nov17 Newsletter now released. #clinicaltrials #patientinvolvement #PPI
You might be interested in the Research4Me Nov17 Newsletter
You might find this newsletter from Research4Me interesting, if you have an interest in clinical trials, and public and patient involvement in them.
Copyright © 2017 Research4Me, All rights reserved.


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