Additional authors include; Audrey Tasaranarwo, Obed Mukuya, Beauty Nerupfunde and Charles Chasakara
HIV vaccine research was a new concept in our communities, and the occurrence of Vaccine Induced Sero- Positivity (VISP) in HVTN 705 (Imbokodo) participants had a negative impact on other prevention studies being done at Clinical Research Sites (CRSs) where Imbokodo was conducted, such as HPTN 084. There were rumours that participants were being infected with HIV. Participants were counseled about VISP when they were enrolled and throughout the study. They were instructed to disclose their participation in an HIV vaccine study to health workers whenever they sought healthcare. Stakeholders and participants from other studies looked with suspicion at the instruction given to Imbokodo participants to only seek HIV testing at HVTN sites, whereas the standard of care at hospitals and clinics is to offer HIV tests to all patients if they fall sick. Failure to disclose that they were in an HIV vaccine study could result in commencement of ARVs. It was against this background that the Community Advisory Board (CAB) realized that rumors were affecting other research studies, and they were being fueled by lack of accurate information.
The CAB, in collaboration with research staff, held 10 meetings with various community groups to give study overviews of all prevention studies at the HVTN- affiliated sites, disseminate the results of HPTN 084 and HVTN 705, and to sensitize stakeholders about HIV vaccine studies with a special focus on VISP. The following groups were targeted to attend: medical and non-medical staff at Chitungwiza Central Hospital and Municipal clinics, health promoters, male-focused groups, and stakeholders such as NGOs, business people, religious leaders, traditional healers, Zimbabwe Republic Police, and the Ministry of Education. Over 200 stakeholders attended the 10 meetings.
Stakeholders appreciated the results from both studies and were curious to know the way forward after the disappointing Imbokodo results. They wanted to know when they should expect to find the Cabotegravir Long Acting injectable on the shelves after the promising results. It was evident that HIV vaccine research literacy is limited among stakeholders, especially in the non-medical staff. Little was also known about VISP, and only a few understood the concept of Pre-Exposure Prophylaxis (PrEP) described in the HPTN 084 study. Conversely, health workers at local clinics where studies are being done were well informed because the studies were running on their premises.
These dialogues taught us that communities should be involved from the onset, and sensitization should continue throughout the study. Research involving new technologies should be carefully and widely explained to gain community buy-in, and to avoid rumours that can potentially harm participants and studies. Updates to key stakeholders should be frequent throughout the study. We should prioritize health workers when engaging stakeholders because they are in touch with members of the communities daily. Implementation of Good Participatory Practices (GPP) principles in research is critical, and there is a strong need to explore other forms of communication, such as using social media, to keep discussing health issues and to distribute new information.
Alexious Zindoga, Audrey Tasaranarwo, Obed Mukuya, and Beauty Nerupfunde are CAB members, and Charles Chasakara is the CTU Community Engagement Coordinator, at the University of Zimbabwe Clinical Trials Research Centre (UZ-CTRC)/Seke South CRS in Harare, Zimbabwe.