Research4Me Race to Research Newsletter Apr18

On 9 April, around 30 people took part in a 90 minute session we hosted at the 2018 Patient Experience Symposium in Sydney discussing the participant and consumer representative experience in clinical trials. There were lots of insights shared from both perspectives, so much so we didn't get to brainstorm how the experience could be improved as planned. A short summary will be produced and released publiicly, hopefully alongside videos of the key speakers presentations (with their permission).

Over the course of 10 days nearly 1000 visit were made to the website, some people downloaded the conversation starter and clinician resource, and a few people provided feedback via the survey. We even managed to score a short interview on ABCNews 24 talking about the campaign, with a patient that was involved, Andrew Warden. As for how we stacked up in the competition? We find out who won 31st May New York time, so keep an eye on our social media to find out how we did!

Though created for the competition, we will continue to support the AskAboutClinicalTrials.com website for the foreseeable future as a resource for both members of the public to learn how to start a conversation with the doctor about clinical trials, for clinicians that may not be so familiar with clinical trials to learn how to support patients that might be asking, and for the public to feedback on their experience talking to their clinicians about trials. That feedback may lead to new ideas or improvements that can help better support both the public and clinicians to engage with clinical trials.

Even though the competition is now over, we would still like to encourage you to ask your doctor about clinical trials and feedback on that experience, share the website, and encourage others to #AskAboutCTs. Click the picture above or here to watch people talking about why they think you should ask about trials, and visit AskAboutClinicalTrials.com for more information.

On 11 April, around 50 people (online and in person) were part of our ThinkTank to explore the issues people have finding and providing useful information about trials, and ways these issues might be addressed.
Alot was shared from both patients and those professionally involved in trials that we hope was productive for all involved. We are now slowly working our way through what happened on the day and getting appropriate approvals in place in order to compile and make public a report from the day. Stay tuned for more on this.

We'd like to send a big thankyou to everyone that made the day possible, including Lisa Briggs who started the ball rolling, all our speakers that shared their knowledge and experience, our design-thinking facilitator Sara Wiedenhaefer for her flexibility as the day evolved, our sponsors (The Sydney Partnership for Health, Education, Research & Enterprise (SPHERE) , The Lung Foundation Australia, and TrialDocs) for helping to cover the meeting costs, and the active participation of all whom attended.

Not all trials are for people without options, or for testing new drugs. To demonstrate the diversity of clinical trials looking for volunteers, here are 5 trials listed on the ANZCTR that recently began recruiting in Australia:

Snoring Sound Analysis for the Diagnosis of Patients with suspected Obstructive Sleep Apnoea. This diagnostic trial running in Woolloongabba QLD is looking for 50 participants.
An app-based intervention to improve the packing of healthy food in children’s lunchboxes in childcare. This trial running in the Hunter New England region of NSW is looking for 390 participants.
Personalised advice and instructions for pain relief following discharge from ED (PAIN study). This trial in Perth is looking for 80 participants.
A phase I, placebo controlled, dose escalation safety and pharmacokinetic study of Topical Endoxifen in healthy male volunteers. This Melbourne trial is looking for 24 health adult males to participate.
Improving Engagement in Patients with Young Adult Onset Type 2 Diabetes (Text2U) . This Sydney trial is looking for 40 participants.

Research4Me has no links with any of these trials. If you are interested in more information on them, please click the links and contact the investigators listed directly.

Here's ten recent articles we've come across that you might find interesting relating to participation, public engagement and change in clinical trials:

Debunking the myths about clinical trials. A very simple explanation of a few of the myths that are commonly held about clinical trials.
'We are the answer we're looking for': Michael J. Fox Talks Clinical Trials and His Return to TV on 'Good Morning America'. Michael shared what he tells people living with Parkinson's about the importance of getting involved in clinical trials.
Participation in clinical trial helps young woman take control of her diabetes — and her life. Involvement with a diabetes clinical trial set in motion a virtuous cycle that has led to more improvements than just this patient's health.

The people that make radiotherapy possible: Part 2 – clinical trial patients. A patient tells her first hand experience of what it was like to be in a radiotherapy clinical trial.
One Participant’s Perspective. Despite having experienced an adverse event in a trial that left her struggling to breathe, this person remains convinced that the risks of participating in research are more than offset by the potential benefits.
The plain language Glossary of Evaluation Terms for Informed Treatment choices (GET-IT) at www. getitglossary.org. This article describes the development of a glossary to provide plain language explanations of commonly used terms in health research terms. Let us know if you think we should add the GET-IT glossary as a resource in our community.
AllTrials: most public funders don’t force reporting trial results. According to Alltrials, an international initiative advocating for all clinical trials to be registered and reported, most of the top non-commercial funders of clinical trials have no policies that mandate the eventual reporting of study results.
#HowTo Engage Patients. This website is a crowd-sourced collection of feedback on patient engagement, including research articles, tools and templates for both patients and researchers.
What constitutes meaningful engagement for patients and families as partners on research teams? This journal article explores feedback from 19 patient research partners in Canada about what they felt made their engagement meaningful.
Enhancing the incorporation of the patient’s voice in drug development and evaluation. A journal article discussing the US FDA's Patient-Focused Drug Development (PFDD) initiative, lessons learnt, and how incorporation of the patient’s voice in drug development and evaluation continues to be a priority for FDA.

May 20 is International Clinical Trials Day. It celebrates the first recognised controlled clinical trial of modern times, where James Lind investigated potential cures of scurvy, and discovered the role of citrus fruits in curing it. In a light-hearted approach last year, we used the James Lind trial to help debunk 5 common myths that exist about clinical trials .

There's lots happening in May to celebrate clinical trials. Here's a few events you might like to check out:

the US-based Coalition for Clinical Trials Awareness Clinical Trials Awareness Week 30Apr-4May;
the UK-based #WhyWeDoResearch tweetfest 14-18May;
The ACTA Clinical Trials 2018: National Tribute & Awards Ceremony in Melbourne 16May;
Other Australian-based events listing will be available here.

By joining the Research4Me community online, you have access to groups and forums to ask questions and provide feedback, additional resources and member-only opportunities to get involved.

Tap into the collective knowledge of other members of the community about clinical trials. The community is only new and members seem a little shy to contribute so far, but we hope that will change and people will see the value of being active members, supporting each other, getting involved, and making a difference to clinical trials together.

Not ready to join the community? Keep an eye on the opportunities that come up in the meantime.