This past year, CISCRP celebrated its 10th anniversary of its live, award-winning educational program, AWARE for All. This free program brings public, patient, and research communities together to explore the clinical research process and the risks, benefits, and rights of study participants. The AWARE program also features talks that address minority health issues and target diseases prevalent in minority populations. Research shows that the general public has very limited knowledge of how the process works, what it means to participate, and the role that clinical research plays in advancing public health.
The Inaugural AWARE program was delivered in Boston, MA in 2004. Since then, AWARE has been offered in more than 30 cities across the country and has educated more than 7,000 attendees. In 2013, EMD Serono established national sponsorship support for AWARE, allowing CISCRP to expand the programs in the US and to begin planning the first AWARE program slated for London, UK in 2015.
The partnership between CISCRP and EMD Serono was recently selected as a notable case study to be presented at MassBio’s Patient Advocacy Summit. Paulo Moreira, Vice President Global Clinical Operations, Head of External Innovation at EMD Serono, and Maya Wise, Communications and Events Coordinator at CISCRP presented to a group of research professionals and patient advocates at the Genzyme Center in Cambridge, MA.
To generate internal company support, “I sent a memo to my colleagues and told them that we are sponsoring AWARE for All, and asked if they would like to be a part of it; would they like to help educate the patient community?” said Paulo. “And the outpouring of support has been amazing. Nothing beats the experience of sitting in front of patients and hearing directly from them. There’s no memo, no video or tutorial that can mirror the profound insights gained through direct exposure to patients.”
EMD Serono believes in the importance of programs like this not just for the patients, but also for professionals. “That was the purpose of this partnership. We wanted to take the first step in the industry towards broad education, but also internally we wanted to build a culture of patient-centricity.”
The program provides a unique platform for dialogue between research professionals, health advocates, patients, and members of the public in a neutral setting. Through interacting and partnering with local hospitals, educational institutions, research centers, disease-specific organizations, faith-based groups, and community centers, CISCRP is able to strengthen connections and create a grassroots movement in the months leading up to each AWARE event.
EMD Serono holds firm on their support for the program’s mission. “We do not practice patient education as means to increase patient recruitment,” states Paulo. “We are often asked, ‘What do you get out of it, what’s the ROI?’ We want to shift that focus from a quantitative aspect to a qualitative one. Well educated patients and communities will lead to an uptake in clinical trial volunteerism and participation.”
“We believe if we do things right—if we involve the patient, if we educate communities, if we build a culture of patient centricity within our organization— the patients will come. And as an industry, we’ll have an impact on addressing the issue of engagement.”
CISCRP is always looking for individuals and teams interested in hosting an AWARE event in their city. AWARE hosts recommend the venue, planning team members, speakers and more. Our local level champions are a driving force behind our programs, and we are always eager to meet new individuals who are dedicated to educating the public about the importance of clinical research participation. If you would like to champion an AWARE in your city, please contact Ellyn Getz at firstname.lastname@example.org.