It is with a heavy heart as founder of Research4Me that I make the following announcement.
After alot of soul searching, I have made the decision that Research4Me has run its course. It is time to close its doors.
Research4Me was started to fill I gap I perceived in the need to centralise information and support around consumer awareness, participation and involvement in research, particularly clinical trials. And so I set off, with my own money in hand, to start Research4Me as a social enterprise, delivering services to fill some of those gaps in order to build a community and capacity for research.
I officially launched the brand in February 2017 with a report on the barriers and enablers of consumer involvement in research from a consumer perspective, co-produced with Health Consumers NSW. Since then, I feel Research4Me has contributed something toward making people more aware and confident around the opportunities to participate in and contribute to medical research and clinical trials in Australia. Here’s just some of the ways we hoped we have helped:
- Building a community across all our social platforms of a couple of thousand people interested in or engaged with research;
- Connecting people with clinical trials they might be able to take part in;
- Being an open ear and advocate for the challenges consumers (and researchers) are facing in research, such as improved trial registration and reporting, making trials more accessible;
- Advocating for and driving consumer attendence / travel support for consumers attending research and industry events/conferences;
- Our Knowledge Centre, and weekly #TrialsTues initiative to demystify clinical trials & supporting researchers to promote their trials and consumer involvement opportunities;
- Our PopupStar campaign encouraging people to Ask About Clinical Trials;
- Our Thinktank with recommendations to make it easier for people to find clinical trials ;
- Our publications to help jargon bust terminology and acronyms, educate clinicians about research, support consumers to ask clinicians about clinical trials, and more;
- Providing training for researchers and consumers to learn to work together;
- Provision of travel support to financially assist consumers to attend conferences;
- Sharing or stories, experiences and resource around clinical trial participation and consumer involvement in research, via our presentations, Latest news, Newsletter, Social media and Research Gamechangers Facebook group;
- Sharing the surveys and work of other organisations seeking community input into various initiatives and sourcing consumer participants and speakers for various working groups and events;
- Contributing to the ACTA Consumer Engagement Reference group and Toolkit, Patient Focused Medicine Working Groups, and driving consumer participation and experience of the 2019 ARCS conference, and much more;
- And of course, our most recent networking event which we are pretty sure based on the discussions will lead to more for those that attended.
I have made some fantastic connections and connected lots of people, learnt from and about people doing wonderful things and shared broadly everything we have learnt along the way.
But the fact is, despite all these connections and activities, there are much bigger organisations that are better funded than me developing resources and infrastructure to support consumer engagement, and there doesn’t appear to be a place for Research4Me to sit within that space, sustainably.
I remain deeply committed to advocating for and supporting consumers to get involved in research and therapeutic development, and so will continue to look for opportunities to do that personally. I know from the experience of Research4Me that despite all the infrastructure being developed, there is still an absolute need for a place for ongoing human support and connection, not just guidances, static websites and one-off training. For this reason, I will continue to personally run the Research Gamechangers Facebook Group as an independent place for connection and sharing of information, and I will continue to help people find clinical trials as a service through AccessCR (Research4Me’s parent company). The information and resources developed for Research4Me will in time find a new home back on the AccessCR website (the parent company of Research4Me).
I thank everyone that came on this journey and engaged with/supported Research4Me, including our web developers, marketing support, admin assistants, casual staff, volunteers, our Tribe and community, and especially my husband and family, that indulged this passion both emotionally and financially. Most of all, I would like to express my humble gratitude to the many people who share very personal details of their lives with me, and in some cases our community, many of whom I now cherish as friends. Long may you remain healthy, doing the amazing work you are all doing as individuals, being the blessings you are to your families, friends, the community, and future patients and carers.
For those that have registered on our mailing lists, or database, we will be in contact with you regarding how we will be handling your records.
This is not the end of my personal journey to support consumer engagement and involvement in research, but it is time to find a new way to do it beyond Research4Me.
If you are reading this, then I hope you too will go on to do more too, so we get the research patients need done well, faster, implemented and respectful of the participants and end-users it aims to serve.
Yours, with thanks and respect,
Janelle.
