In 1993 the formation of a community advisory committee was groundbreaking. Over the past 25 years the CTN has been at the forefront of including community in its operations, allowing formal community engagement, particularly from people living with HIV.
“The committee provides a critical review from the perspective of people living with HIV and other community stakeholders. We aim to ensure that trials are fair, ethical and relevant to people living with HIV,” says Shari Margolese, CTN Community Advisory Committee (CAC) chair since 2012.
Since its first meeting in May 1993, the CAC has helped guide and shape the work of the CTN through reviewing protocols and representing community on other CTN committees. The early inclusion of community in a research network set the CTN apart with the only committee of its kind, and has since served as a model for community participation in many other health research organizations. To date, the CAC has reviewed over 300 trials, and continues to play an active role in the conduct of clinical research in HIV and related co-infections in Canada. “When reviewing a potential study we ask each committee member: ‘Would you participate in this trial?’ The answers provide investigators with a kind of ‘litmus test’ for the acceptance of a proposed study in the general community,” says Ms. Margolese.
CAC members act as informal knowledge brokers, connecting individuals and communities of people living with and affected by HIV with Canadian HIV researchers. CAC members review clinical research protocols and informed consent forms and bring forward research ideas of interest to the community at CTN Core meetings. Additionally, members provide ideas on recruitment for specific studies, and are key to knowledge translation activities.
“There is an iterative element of mentorship and knowledge exchange as a committee member,” says Ms. Margolese. “CAC members teach researchers and postdoctoral fellows the value that community brings to research.”