Box 6.12

Disseminating information, demanding information: the dual roles of advocates when trials close

By Deborah Baron, MMCI Coordinator, GCM and Lori Heise, Former Director, Global Campaign for Microbicides*

The closure of the N-9 study in 2000 and protests about the oral tenofovir PrEP trial in Cameroon in 2005 taught the HIV prevention research field critical lessons in communications—wherever information gaps exist, misinformation and rumor will fill the void.

Less than a decade later, when the cellulose sulfate (CS) trial closed early, no fewer than 27 advocacy and citizen media list servers covered the closures (Robinson 2007). These list servers enabled groups to maintain a steady information flow and dispel any surfacing rumors about the CS study and closure.

In the lead-up to the public announcement, a few long-time advocates were informed of the closure during the pre-embargo period. Early access to confidential information enabled these groups to plan ahead and strategize a public response. The U.S.-based groups Global Campaign for Microbicides (GCM) and AVAC, as well as the African Microbicide Advocacy Group (AMAG), decided to release a joint statement timed with the public announcement of the closure. The key message stressed the importance of continuing microbicides and other biomedical prevention research (African Microbicides Advocacy Group and others 2007).

In addition to the press statement, these groups circulated background materials and an initial Q&A to their list servers, reaching over 5,000 advocates worldwide. The quick availability of easy-to-understand materials helped quell confusion and suspicion among advocates. The AMAG list server and Nigeria AIDS e-forum moderated by Journalists Against AIDS offered online platforms for African advocates to express concerns and ask questions about the scientific and ethical procedures of the closure. Trial sponsors and site staff members were invited and often responded to questions in these e-forum dialogues (Robinson 2007).

Since many people in Africa lack reliable Internet access, the GCM sponsored a series of tele-briefings that gave stakeholders an opportunity to ask questions directly of the investigators and members of the independent data and monitoring committee that made the recommendation to stop the trial. By providing direct access to key decision makers, these calls helped to dispel rumors, reduce suspicion, and disseminate accurate information.

*Lori Heise is currently a Lecturer at the Gender, Violence and Health Centre, London School of Hygiene and Tropical Medicine.