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From our founder....

This past week I had pause to reflect on (yet another) conversation with someone about why I was pursuing Research4Me, cautioning me of the very high risk of failure. After all, clinical trials are just not something people think or care about. I have to acknowledge failure is a very real possibility. But, for me, the why is too important - faster access to life-improving, life-saving treatments. I know one way to speed up better treatments being available is to speed up clinical trials. An obvious way to speed up trials is to make sure they can recruit in days to months instead of years. 

Why is it that the top musicians can sell thousands of concert tickets in minutes, yet it can take years to find enough people to complete a clinical trial? Why do we not care as much to be on the constant lookout for out opportunities to be involved in research that can change lives as we do to buy tickets to spend a couple of hours with our favourite artist bashing out some great tunes?

I believe the answers to speeding up clinical trial recruitment lies within the general community. You understand your health issues best. As such, you can help guide researchers in designing better clinical trials that address the questions you need answered and are conducted in a way that will minimise burden to people like you.  You know what makes a great healthcare experience and can help clinical triallists create that so there are actually queues of people lining up to get onto trials.  You often have the personal networks to help find people for clinical trials. You have family and friends you are passionate about caring for and will want to know they have choices and can access anything that might help.

You hold the answers to making better treatments available faster, if you just knew it, knew how to get involved, and were supported to do so.

Research4Me wants to be that support, providing a place not just for information about clinical trials, but for personal connection with others like you, interested, willing and/or already involved in trials. Let's be the network that can speed up new treatments, so if you ever need them, they are there waiting for you, rather than you waiting for them.

So what are we up to at the moment?

We've probably looked a little quiet during October. That is because we've been concentrating on building a better website, which is now looking quite different.  Our first community spaces should also be finally ready mid-late November after we've had a few of you take a good look at them. Keep your eyes peeled for this paid opportunity on our facebook page in the next week or so. 

I'd love your feedback on whether the website is heading in the right direction, with useful content and is easy to find your way around.  Though some content is still being revised, I am happy to put the new website out there in the public domain as a work in progress, because it is only with your feedback that we can make it the resource you need to help you. If there are things we can do better, or things you would like the website to have, let us know.

November will be a busy month of publicly talking about what Research4Me hopes to be, and the value of public and patient involvement in clinical trials with researchers and industry groups.  If you'd like to catch up with us, check out our new events page on the website for where we will be. And, to meet me in person (virtually), join me for my first Facebook Live Q&A Friday 3Nov at 12-12.30pm AEDT. I'd love to answer any questions you have about Research4Me and hear what you'd like from us.

As always, we welcome your feedback on our direction and what would make your journey to learn about and get involved in clinical trials easier.  Research4Me is nothing without you. I'm ever appreciative of your support and engagement with us.

                                                               Kind regards,
                                                               Janelle, 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.


Trial Spotting

Each month we try to demonstrate the diversity of clinical trials by showcasing 5 of the clinical trials listed as currently recruiting participants on the Australian New Zealand Clinical Trials Register. 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.
  • Effect of a behaviour change program on physical activity levels and blood pressure in people who have had a recent TIA or mild stroke. This clinical trial is looking for 40 participants and is running in John Hunter Hospital, New Lambton, NSW.
  • A Phase 1 healthy volunteer clinical trial testing the safety, tolerability, immunology (how the study drug affects the immune system), pharmacokinetics (how the body effects the study drug) and pharmacodynamics (how the study drug effects the body) of single and multiple doses of a new drug called ACP-014 when given as a subcutaneous (into the skin) injection. It is being run in Melbourne and is looking for 80+ health males and females aged 18-60 years of age.
  • The Breast Milk Omega-3 Trial: Effect of high omega-3 supplementation of breastfeeding women on omega-3 fatty acid concentrations in breast milk. This trial is running in Adelaide and looking for 50 women breastfeeding (or intending to).
  • Exploring whether pill-swallowing aids make it easier to swallow tablets whole by people who self-report disliking swallowing them. This trial is running in Queensland and is looking for 210 people.
  • An open evaluation trial of the iSleepWell digital health program for insomnia and stress-related symptoms. This trial is looking for 70 people in Australia, NZ, Canada, UK and US.


Introducing a new team member - Janelle Morrissey

In September, Janelle Morrissey joined Research4Me as a casual member of the team to provide occasional administrative help and review of ideas and content we create. Janelle provides a voice for health consumers, patients and carers as a volunteer with a number of groups and has an interest in consumer involvement in research.  I asked Janelle if she would mind sharing a little about herself by answering the following questions.

In one sentence, how would you describe yourself?
Empathetic, perceptive, motivated, open-minded, creative, deep thinker, relate to people from all walks of life, intuitive, helpful and caring.

What’s your favourite thing to do/makes you most happy?
Connecting/enjoying life/working with others, time to myself, inspiring others, knowing that what I do helps people and makes a difference.

If money was no object, how would you spend your time?
Helping others, having fun, being creative, time with others and by myself, with greater opportunities to really make a difference in peoples lives.

What inspires or motivates you?
My children, when I have helped to open peoples minds to new possibilities/ perceptions/ innovations/ connections (and/or others have done so for me), and other people helping others/ themselves and working together to improve lives, health and happiness.
 

Spotlight on ClinTrial Refer - an app to support trial recruitment

This week MTPConnect, a federally-funded growth centre for the medical technology and pharmaceutical industries, awarded over $7million in funding to 20 projects to help improve the industries.  Research4Me was pleased to support one of the successful projects - ClinTrial Refer (see press release from MTPConnect and ClinTrialRefer).

ClinTrial Refer currently hosts a suite of mobile phone apps for different organisations running clinical trials to promote the trials that they are doing, and enable easier referral to those trials. The funding received this week will enable ClinTrial Refer to consolidate the IT infrastructure supporting these apps, and link with the existing clinical trial register to provide a more user-friendly, comprehensive search tool for clinical trials in Australia (although they also have international interests they hope to grow).

We supported this application because we want a better resource for the community to search for and access clinical trials that are currently seeking volunteers that is current and complete that could benefit  Australians and the Research4Me community. 

We look forward to seeing how ClinTrial Refer develops and the input the Research4Me community may be able to provide to improve it. In the meantime, you can view/search their current range of apps on their website and download them apps on iTunes/Google play.


What We've Been Reading...

Here's a small 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).

FDA Patient Engagement Advisory Committee Meeting Summary and Materials/Presentations
On 11-12 October, the US Food and Drug Administration (FDA) held the first meeting of its newly established Patient Engagement Advisory Committee (PEAC). The purpose of the committee is to provide advice to the FDA Commissioner or designee, on complex issues relating to medical devices, the regulation of devices, and their use by patients. The first meeting was all about patient engagement in clinical trials. It is great to see regulatory agencies moving in the direction to incorporate the voice of the patient in the process of therapeutics development.

Journal Article: International Children’s Advisory Network: A Multifaceted Approach to Patient Engagement in Pediatric Clinical Research
Having met one of the people helping develop iCAN back in 2014, it is great to see this network growing in strength and contribution to clinical trials internationally. We're sorry the Sydney chapter started in 2015 seems to have disappeared but hope Australian youth can get involved again in the future. Research4Me would love to help if there are youth and researchers interested in this.

Journal Article: Discrepancies between ClinicalTrials.gov recruitment status and actual trial status: a cross-sectional analysis
It is so important that both researchers and potential participants have accurate, up-to-date, complete information on trial registers to inform their searches. So we were interested to see this analysis of small number trials on the US trial register confirming what many of us know - trial register information is often out of date or wrong.  Those running clinical trials need to do better. 

Event: #DropTheJargon Day, 24 October.
Six out of 10 Australians have poor health literacy. Healthcare professionals (including clinical trial staff) need to be able to communicate in a way that is jargon-free for most people. When we saw DropTheJargon Day Oct24 launched as an opportunity for professionals in Australian health, community services and local government to pledge to use plain language, we thought it was an event worth promoting. We even released our own clinical trials jargon buster we hope will help.

Industry NewsSite: Patients as partners, communication key to designing rare disease clinical trials
This article discussing a paper that was published outlining efforts by the American Society of Paediatric Nephrology to improve their paediatric clinical trial designs. They found that by partnering with patients, they could achieve better results, and communication was key for avoiding flaws in trial design. It is great to see patient input being acknowledged as valuable, and why we want to make sure it is common place to involve patients in clinical trials, beyond the role of a participant of the research.

The Conversation: Randomised control trials: what makes them the gold standard in medical research?
This is a great post written by some Australian researchers about clinical trials addressing some of the common unknowns regarding randomisation, placebos and the concept of clinical equipoise that is so vital to clinical trials.

Eli Lilly: Clinical Trial Caregiver Stories
There are lots of stories recognising clinical trial participants for the important contribution they make to advancing medicine. What we don't see much of are the caregivers that support people taking part in trials and their stories. So we like this initiative from Eli Lilly (a pharmaceutical company) to give a voice to carers involved in clinical trials with their loved ones.  If you have a participant or carer story to tell, please consider sharing your experience so others can learn more about the process, challenges and benefits.

Journal Commentary: Health research participants are not receiving research results: a collaborative solution is needed
There is general agreement between participants, researchers and organisations that giving the results of research to the participants involved is good practice. And yet, it doesn't routinely occur.  Why? Well there's little research to answer this question. The authors of this piece suggest a collaborative approach is needed to set the research agenda to understand the best practices for results sharing.
 
We hope you have enjoyed the October 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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