Getting started...slowly

Welcome to our first official newsletter! Since the release of the report we co-produced with Health Consumers NSW in February, we've been progressing very slowly.

We had a couple of false starts of the tech front, and are really glad for the feedback a few of you provided in terms of the platforms we were considering implementing. That feedback changed our path to now developing something from scratch.

To that end, over the past 2 months, we have been getting back to basics and talking to a variety of stakeholders about their real issues in clinical trials to see whether there is a gap we can fill. We are super-passionate about getting the public better engaged and supported in clinical trials, but we want to make sure we can do that in a sustainable way.

We are very definitely still at the start of this journey, and we are glad you've come along for the ride.  We want to spend time with our stakeholders (consumers, patient groups, researchers or industry professionals) to learn from you what it is that makes your clinical trial journey a wonderful experience, or difficult. Only then, will we really know if we can create something that will make a positive difference.

So this is going to take time. Rome wasn't built in a day, but it is still standing, and that is what we want for Research4Me. 

You can help us by participating in and sharing the opportunities we send out for feedback or engagement through your networks. For the moment, our central communication tool is our Facebook page, though you will find us tweeting and sharing the odd post on Instagram.  I'd like to encourage you to check in to our Facebook page regularly to see if there is something of interest to you.

For the next few weeks we will be busy listening to our stakeholders in person, on the phone and via the surveys below. We're also working hard on our potential tech solution for supporting the community's journey and experience of clinical trials, finalising our first training, and preparing to chair a panel discussion at the ARCS Conference on the 24th August titled: "The Role of Consumers in Developing New Therapeutics". To that end, ARCS Australia have made a special opportunity available, which I'd invite you to consider below.

Thanks for being a part of the community we are trying to build, Please reach out if you have any suggestions or feedback on what we are (or should consider) doing.
                                                                                              Best regards, 

Current Opportunities to Engage and Inform our Journey

Are you interested in training on how researchers and consumers can work together to create better clinical trials?

We're currently assessing interest in this training with a view to the first session being held in Sydney mid September. Those that pre-register will be offered a discount on future training sessions. So please take 5mins to pre-register now so we know this is a topic you'd like to learn more about.

Are you a consumer rep that has been partnered with researchers and/or industry in therapeutic development?

ARCS Australia are making available 5 spots for consumers to attend the session we are chairing at their conference on Aug 24th.  To make sure those attending may be able to contribute to the discussion, there are some selection criteria. 
To be in the running for one of these spots, please review and complete the 2-5min application form before the 31st July. We will email applicants with the outcome of the selection by the 5th August, so you have time to plan.
Complete one of the following 2 surveys before 31 July and help raise money for 3 Australian consumer organisations supporting medical research
The following surveys seek feedback from those who haven't, and those who have, participated in a clinical trial. These surveys will help us identify what gaps may currently exist along the pathway for being involved in clinical trials and whether a technological solution could be of value and used.

For each survey completed before 31st July,by a unique person with a unique email address (up to a maximum of 60 responses per survey), we will donate $5 toward one of 3 Australian organisations: The Unicorn Foundation, The Sanfilippo Children's Foundation and Love Your Sister. You will tell us at the end of the survey which of these organisation you'd like to send the money to.
Click on the images below to go straight to the surveys.

Upcoming events

We organise the #AusCT twitterchat, which is designed as an open opportunity for all the stakeholders of clinical trials to get together to discuss related topics.
The last chat was on cybersecurity in clinical trials. The next chat is planned for Fri 1 Sep and will discuss paediatric clinical trials. Stay tuned for updates via our social media channels.

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