W-18: Monitoring and Evaluating Community Stakeholder Engagement Strategies in Populations at High Risk of HIV in Pattaya, Thailand
Kirsten Seay Smith
Director, Clinical Research Division
Armed Forces Research Institute of Medical Sciences Thailand
The aim was to develop and evaluate robust and meaningful community stakeholder engagement (CSE) strategies and plans to support conduct of ethical and scientifically relevant clinical studies of acute HIV infection in men who have sex with men (MSM) and transgender women (TGW) in Pattaya, Thailand.
CSE strategies were focused on stakeholder engagement, stakeholder education, advisory mechanisms, and study enrollment and retention. Measurable indicators were selected in each area and engagement tools were monitored and evaluated from 2013-2017 for effectiveness and impact on CSE program goals.
ECHO Center at the Armed Forces Research Institute of Medical Sciences, Pattaya Annex, Thailand has developed robust engagement strategies to work with the local community and stigmatized populations to support conduct of an observational study that characterized incidence and risk behaviour in MSM and TGW populations and viral dynamics of acute HIV infection, as well as two interventional studies. Indicators were selected to monitor effectiveness of the conduct of our CSE plan as well as the achievement of CSE program goals in each of the 4 focus areas. Program goals in the community included building relationships and trust, developing research and HIV literacy, developing two-way dialog with stakeholders, and supporting participant enrollment and retention. Annual study enrollment, screening to enrollment ratios, and retention rate were monitored to assess effectiveness of volunteer engagement. Retention rates ranged from 72-77% over the 4-year period of Oct 2013- Sep 2017; while the annual screening to enrollment ratio of 1.5 in 2013 increased to 1.9 in 2014, then generally decreased thereafter to 1.2. Enrollment in 2013 was at its lowest, rebounded in 2014, and decreased consistently until 2017. To measure relationship building and trust, we monitored the number of community stakeholders who requested ECHO’s participation in events as well as the total number of ECHO’s partnerships. The number of annual requests for participation increased over time, from 25 requests to 41, and ECHO increased its total partnerships from 10 NGO and government partners to 26 partners by the end of 2017. Engagement staff developed and conducted a program of stakeholder education that focused on developing understanding of research and HIV vaccines, study-specific information, prevention of HIV and sexually transmitted infections, and knowledge of LGBTI issues. The number of participants educated increased over the 4-year period from 95 to more than 260 community members annually.
The role of CSE in fostering ethical, respectful, and successful clinical study conduct is becoming increasingly recognized, as is evidenced by the increase in published research, guidelines, and tools focused on CSE. As trial sponsors increasingly implement CSE plans, there is a need to monitor and evaluate these tools and strategies so that the tangible benefits to the outcomes of research can be understood and the most effective tools can be developed. We monitored indicators in 4 focus areas of our CSE plan and used these results on an annual basis to inform strategies for subsequent years. Our consistent retention rate indicated overall satisfaction with our direct volunteer interaction. The sharp decrease in overall enrollment in 2013 was a result of a deliberate slowing of enrollment owing to a protocol amendment as well as an increased capacity of local NGOs to provide HIV testing services resulting from a new source of international funding. In response, ECHO successfully increased its local partnerships and worked to build awareness of the clinic and reach more participants through outreach and education. Although these efforts were initially successful in 2014, enrollment declined again from a combination of factors, including the availability of new clinical research studies for the target population, migration of volunteer population because of declining employment, and changes in social factors that impacted outreach. The increasing number of partnerships and joint activities reflected a continued growth in trust between ECHO and a range of community stakeholders. This relationship and open dialog was supported by stakeholder advisory mechanisms such as focus groups and the Community Advisory Board, allowing ECHO to receive direct feedback on a range of issues. Subsequent work will focus on enhancing CSE evaluation by increasing the collection of feedback on engagement effectiveness, and combining these data with existing monitoring tools.