Community Stakeholder Engagement during a Vaccine Demonstration Project in Nigeria: Lessons on Implementation of the Good Participatory Practice Guidelines

Community and stakeholder engagement is considered an ethical imperative for vaccine research, as it can enhance the quality and outcome of research, facilitate social change emanating from individual and community empowerment, and enhance both the science and the sense of joint ownership of a study by both researchers and research stakeholders. To that end, as part of its purview, the Nigerian Canadian Collaboration on AIDS Vaccine (NICCAV) project works to identify how best to mobilise and effectively engage stakeholders in HIV vaccine research. This paper reports on the successes and challenges with implementing the good participatory practice (GPP) guidelines for the community and stakeholder engagement component of the NICCAV project.

NICAAV researchers contracted an independent civil society organisation (CSO), the New HIV Vaccine and Microbicide Advocacy Society (NHVMAS), which had years of experience working with the community on new HIV prevention technologies, to develop a community stakeholder engagement plan based on the GPP, a formal document prescribing community engagement principles for biomedical HIV prevention research. NHVMAS began the community engagement programme one year after the initiation of the NICCAV study, which enrolled 534 HIV-1 exposed sero-negative study participants who were 18 years old and above from Jos Metropolis, Nigeria and its environs, from October 2011 until December 2012. Community engagement consisted in:

• Community mapping: A 2-day community mapping process engaged 65 stakeholders involved in the HIV response in Jos metropolis (e.g., journalists, research team members, representatives of community-based organisations (CBOs), policymakers in Plateau State, networks of people living with HIV, and members of Islamic and Christian religious groups). The community mapping enabled participants to identify, for example, stakeholders and leaders (formal and informal leaders, community authorities, and influential persons) to engage.
• CSO engagement plan: Each of the 20 CBOs actively engaged on the project was expected to reach a minimum of 100 persons per month through a community education programme that discussed the conduct of research in general, HIV prevention, biomedical HIV prevention research, and the NICCAV project. NHVMAS provided technical support to each CBO on how to integrate the awareness raising activities into ongoing organisational public education. Joint research literacy activities were conducted on HIV Vaccine Awareness day and the World AIDS day.
• Establishment of an active community advisory board (CAB): Based on the decision reached by stakeholders at the community mapping exercise, an 11-person CAB was constituted consisting of representatives of the youth, religious groups, the local council, traditional leaders, and the media, as well as the health, justice, welfare, and women groups. Research team members participated in the monthly meetings, 21 of which were held during the lifetime of the project, in order to provide updates on the study progress.
• Media engagement programme: To increase public awareness about the project, 14 journalists had access to study team members and stakeholders when developing stories. Three television stations, 2 radio stations, 4 print newspapers, and the news agency of Nigeria were actively engaged. Media broadcasts and publications about the study were monitored.
• Building capacity to conduct community awareness and education: Every 3 months for 24 months, 35 CSOs (20 actively engaged on the project and 15 as invited stakeholders), 11 CAB members, and the 14 journalists engaged for the project took a 2-day training on the science of biomedical HIV prevention research using a participatory approach. Participants had a tour of the research facility and shown how study participants were consented and enrolled in the study, and how bio-specimens were collected, tested, and stored.
• Advocacy programme: NHVMAS and a research team representative met every quarter with the Commissioner of Health, the Director of the State Agency for the Control of AIDS, the State Coordinator of the Network of People Living with HIV and AIDS, and the State Coordinator of the CSOs working on HIV and AIDS to provide updates on the NICCAV project. In addition, biannual roundtable meetings were organised in Lagos, Jos, and Abuja for national stakeholders to discuss the NICCAV project.

For the present study, an open and close ended questionnaire was administered to 25 randomly selected community stakeholders on the project (10 CBO representatives, 4 CAB members, seven journalists, and 4 NICCAV project staff).

The NICCAV project was found to have exceeded its targets on CBO engagement and community members reached (e.g., it reached 24,882 rather than 2,000 community members, which was 1,244.1% above target). Stakeholders had significant improvement in knowledge about HIV vaccine research design and implementation (p=0.004). All respondents felt satisfied with the community entry, CAB constitution process, function, and level of media engagement; 40% were satisfied with the financial support provided; 70% felt the community awareness and education coverage was satisfactory; and 40% raised concerns about the study site selection with implications for study participants' recruitment. (The perception that this was a Christian project due to the research clinic's location in the Christian part of town made it challenging to conduct community awareness and education programmes for the communities in the Muslim quarters. Participants suggested that research outstation clinics should have been located in the Muslim quarters.)

In short, the NICCAV study community stakeholder engagement model was found to be an effective model for implementing most of the GPP guidelines. It was, however, unable to engage the research team to develop an issue management plan. The study highlighted the limitation with not engaging communities at the project conceptualisation stage and the challenges with inadequate budgetary allocations for its community stakeholder engagement programme.

In conclusion, the researchers note that the engagement of an independent institution to handle the community engagement programme enhanced the ability of the community engagement structure and systems developed for the research study to operate autonomously and independent of influence of the research team. The inclusion of an advocacy and monitoring plan strengthened the process of engaging political stakeholders, capturing information on project outcomes, and identifying challenges that were of ethical concern for the NICCAV study.