Although the public acknowledges the importance of clinical research in developing new medicines, general awareness of clinical trials and understanding of what it means to participate in them remain low. In a global study of more than 12,500 people, The Center for Information and Study of Clinical Research Participation (CISCRP), found that while the majority of people consider clinical research to be very important, most do not regularly discuss clinical trials with their healthcare provider. And nearly two-thirds (65%) believe they could convince their doctor that they should participate if a relevant clinical trial was identified.
Most people consider clinical research studies to be relatively safe. Access to clinical trials, however, is challenging for certain patients based on socio-economic status and ethnicity. Rodney Winley, Senior Director, Patient-Focused Clinical Trials at CSL Behring, sees awareness-building as only half the battle. “The other challenge,” he says, “is understanding the actual barriers to clinical trial participation and helping patients navigate through those barriers. It’s our obligation as the developers of treatments for patients to do our part in making clinical trials available to everyone.”
Many initiatives are underway to help address health disparities and improve health equity. While there has been a significant increase in patient-facing clinical trial information online, most efforts are tied to company-specific programs and attempt to channel patients into specific trials.
CSL Behring was the first of ten companies to sign on to CISCRP’s 5-year AWARE Industry Consortium. Rodney sees this consortium as a way for the biotechnology industry to present a “unified front” to improve clinical research awareness, accessibility, and ultimately participation levels. “We believe that taking the message into communities is a much more proactive and personable approach which will increase the likelihood that we will be able to positively engage patients and caregivers.”
CSL Behring is committed to ensuring that the patient voice is incorporated across all aspects of the clinical trial lifecycle. Their goal for 2020 is to continue to listen to patients’ and caregivers’ needs in order to create a positive and supportive clinical trial experience, co-create a study experience that recognizes patients as partners and an extension of their clinical study teams, as well as improve clinical trial transparency by sharing information that is meaningful and understandable to patients and caregivers before, during, and after clinical trial participation.
In addition to their participation in the AWARE Industry Consortium, CSL Behring assembles a team to participate in CISCRP’s Medical Heroes Appreciation 5K events annually, works with CISCRP to translate clinical trial documents into plain language summaries, sponsors projects with our Research Services team, and collaborates with us to host patient-facing educational content for their MyTrials Hub. They also collaborate with other non-profits to further drive awareness about clinical research and recognize study volunteers by donating flu vaccines to underserved communities on behalf of their clinical trial participants.
We thank CSL Behring for their support and dedication to CISCRP’s mission, for applying patient-focused principles at each stage of the drug development process, for recognizing study volunteers as team mates in the drug development process, and for improving access to information and study opportunities among diverse communities around the world.
Written by Ellyn Getz, Associate Director of Development and Community Engagement
CSL Behring is a global biotechnology company driven by its promise to save lives. The company discovers, develops and delivers innovative therapies to treat individuals with serious and life-threatening medical conditions. The organization collaborates with patient and biomedical communities to improve access to therapies, advance scientific knowledge and support medical research.
CISCRP’s AWARE Industry Consortium builds on CISCRP’s 18-year experience producing and hosting internationally recognized live educational events – called AWARE for All programs, throughout the United States and parts of Europe. Each event engages a local planning committee comprised of members of the public, patients, advocacy groups, healthcare and clinical research professionals, offers educational presentations and discussions, as well as free health screenings and information about local clinical trial activity. Learn more.