A crowded room of over 300 Londoners rose to applaud the final round of speakers at the Camden Centre on the evening of March 7, after the completion of CISCRP’s first-ever international AWARE for All event. A night filled with health checks, 25 informational exhibits, an engaging and informative keynote from a prominent NIHR director, and insightful panel conversations with local, redeemed clinical research professionals and study volunteers – it was a program unlike anything offered to the London public before.
Keynote speaker Simon Denegri, National Director for Public Participation and Engagement in Research, NIHR & Chair, INVOLVE, described this classic Town Hall style meeting of everyday people talking about clinical research as “open, democratic, [and] engaging.” … “It really felt like we were being encouraged to gather and talk about research whatever our perspective. Not to be lectured at,” he continued in his post-event blog post.
Local clinical researchers, university professors, and doctors engaged attendees in discussions about topics such as respiratory and mental health, Alzheimer’s and Parkinson’s diseases, and oncology, sparking numerous questions from audience-members who were eager to learn more about clinical research and how it helps shape the future of medicine. Local patients, too, shared their experiences participating in clinical trials – offering personal anecdotes about the informed consent process, risks and benefits of participation, and what it meant to them to contribute to clinical research.
Like CISCRP’s domestic AWARE for All programs in the U.S., the objective of this program was to instill some basic knowledge about the clinical research process in the minds of typical members of the London community, providing resources meant to assist with informed decision-making about clinical research participation and encouraging attendees to continue the conversation beyond just the 3-hour evening program – with family, friends, and their health providers.
Denegri touched upon this goal in his blog, writing, “if it’s sparked a conversation with their family about research over dinner or spurred them on to have a conversation with their doctor, then it will have done its job.”
This free public education program was made possible by support and community partnership from: Mecrk, ACRP, DrugDev, Synexus, EUPATI, EPF, Myeloma Patients Europe, Leukemia CARE, CML Advocates Network, Patvocates, and Langland.
CISCRP hopes to expand its international presence with the help of local collaborators and continue the conversation about clinical research with local European communities in order to build needed public awareness and general understanding of the clinical research process. In a region so rich with research activity, data shows there is little knowledge and willingness to participate among the general European public in regards to clinical trials.