PUBLISHED

The strongest advocates for bringing awareness to new patients about clinical trials just might be hiding in plain sight.

The secret source: the estimated 5 million people who have participated in a clinical trial over the past decade, and the close to 1 million participants actively enrolled today, says Deena Bernstein, a Senior Strategic Advisor at TrialScout.

For Bernstein and colleagues, those big groups represent largely untapped resources who are very supportive of clinical trials and would help spread the word if given a bigger megaphone.

“People don’t know about clinical trials, and they don’t know where to find them,” says Bernstein. Further, the clinical trial industry can’t rely solely on doctors to champion trials because “physicians don’t always talk about them, either,” she adds.

Bernstein is part of a grassroots effort spearheaded by TrialScout called #FindtheFive, a social media outreach campaign working to leverage the enthusiasm of past and current trial participants to inspire people to investigate trial participation. #FindtheFive is collecting and disseminating advocates’ inspirational stories about why they enrolled in a trial and the difference it made in their lives, or the life of a close friend or family member.

Last week, TrialScout CEO Irfan Khan presented the #FindtheFive campaign at the SCOPE (Society for Clinical Operations Executives) Summit and was named the winner of the prestigious Participant Engagement Award by a panel of industry-acclaimed judges and an audience of clinical operations executives. In 2019, TrialScout placed second in the DPharm Idol competition.

TrialScout bills itself as “the first-ever ratings and reviews platform to empower patients seeking, considering, or already participating in clinical research [that] provides peer-to-peer decision support, education, and is the first platform to give research participants an ongoing voice throughout their journeys.”

#FindtheFive is an ongoing campaign that focuses on finding those 5 million past participants in clinical trials and encourage them to share their experience to help others. The campaign’s focus this month highlighted cardiovascular-related clinical trial participants. While anyone can rate his or her experience at any time, “March is National Kidney Month, and we will be working with sites and patients to grow awareness of #FindtheFive and clinical trials as a care option,” says Colin Myers, Product Owner for TrialScout.

The heart of the campaign is the sharing of individual patient stories, Myers says. For example, one clinical trial participant noted how heart disease runs in his family. “She said she was participating in the trial not just for herself, but because heart disease could potentially affect others in her family,” Myers notes.

For #FindtheFive, the stories are collected historically, and patients can fill out a short two-minute survey at any point, past or present, in their clinical trial journey. Sometimes it happens at a visit where participants are offered the opportunity to share feedback about their experience via TrialScout, and rate the site and overall experience, Myers says.

If each of the 5 million inspires just one more person, the impact would be significant. If you are a current clinical trial patient—or want to share with past or present participants—and want to join the #FindtheFive movement, rate your experience to help someone just like you by visiting info.trialscout.com/find-the-five.

Inspired by Circuit Clinical’s experience operating highly efficient clinical research sites, TrialScout is the first-ever ratings and reviews platform for clinical trials. Globally accessible, the TrialScout website is used to find actively enrolling clinical trials and research centers nearby, access peer-to-peer decision support, and share experiences in the form of ratings and reviews of clinical research centers. TrialScout measures and improves participant awareness, engagement, and retention in clinical research. Built by experts in healthcare, clinical research, and online patient engagement, TrialScout is the innovation the millions of people participating in clinical research have been waiting for.

For more information, contact: jcrisp@trialscout.com.

 

Link to article on ACRP: https://acrpnet.org/2020/02/28/initiative-aims-to-transform-clinical-trial-participants-into-advocates/