The average person doesn’t have a lot of visibility into what goes on in a clinical trial. It’s a world somewhat shrouded in mystery, and that often creates a barrier to entry for participation. Of course, participation in clinical trials is absolutely crucial in order to get important and life-saving treatments into the world, especially for rare illnesses and disorders.
For clinical trials this knowledge gap can create an uphill battle. Not only is it challenging to recruit from a participant population that doesn’t fully understand the importance of taking part in clinical research, but oftentimes research leads and sponsors have to spend more effort on communication strategies to implore people to take part.
Be The Cure – Alberta’s clinical research public awareness initiative – works to address this and bridge the gap between researchers/sponsors and the general public regarding the importance of clinical trial participation.
“The campaign and associated platform were developed strictly to engage the public,” says Mari Boesen, one of the key stakeholders involved with Be The Cure.
Working with Habit Creations Inc. and running for 5 years, Be The Cure started as an Edmonton-only initiative designed to inform the local population of the importance of clinical trial participation. Through a collaborative effort between numerous research institutions – including NACTRC, The Alberta SPOR Unit, Alberta Health Services, the University of Alberta and the University of Calgary – the initiative was brought to Calgary in 2018 and scaled to be province-wide in 2020.
Be The Cure has a simple yet powerful goal: to educate Albertans about the benefits of participating in health research and to allow people to easily find relevant research participation opportunities. “Having a user-friendly platform for everyday people to find studies they can take part in is very important” adds Mari. “Not only does it encourage people to get involved research, but it also creates value for researchers, study teams and sponsors by enhancing recruitment potential.”
On the Be The Cure website people can also discover powerful stories that communicate the true, life-saving potential clinical trials hold. Some of the many stories include: Shanine Lefreniere’s 9-month-old daughter, who was diagnosed with biliary atresia as a newborn and required a liver transplant to save her life; 54-year-old Deborah McCleod, who suddenly struggled to breathe and couldn’t walk farther than 25 feet; cystic fibrosis patient Karen Hamilton, who received new life-saving lungs in a clinical trial study; and young Jillian Karst, who was diagnosed with a painful, itchy skin condition known as psoriasis, which cleared up completely after a clinical trial run of new medication.
To say the initiative has been a success is an understatement. There have been over 8.97 million impressions, over 3 million online video views and more than 700,000 social engagements. Since launch, the trial database saw a 574% increase in people taking action and resulted in more than 24,000 searches for participation opportunities within the first month.
Who benefits from an informed population that supports clinical research?
The entire provincial research ecosystem benefits. A more informed population that believes in the importance of clinical research results in higher levels of engagement and enhances trial recruitment efforts. The alignment of knowledge created by Be The Cure brings people in as partners and creates a collaborative, informed research community where everyone is focused on the same goals.
“It works hand-in-hand with the many research assets, capabilities and resources already available in Alberta to create a truly dynamic and aligned research ecosystem” says Mari.
The success of the platform as a public engagement tool was highlighted during the first months of the global COVID-19 pandemic. As the Government of Alberta searched for a singular platform to provide information to the public about provincial COVID-19 research, Be The Cure was the obvious choice. It quickly became the central hub for all information regarding COVID-19 clinical research in the province, extending its value to government stakeholders.
“I’m proud that the Be The Cure website was selected to be the primary platform to disseminate information about COVID studies to Albertans,” says Mari. “It highlights just how valuable a public engagement tool it is.”
To learn more, visit www.bethecure.ca.