Meaningful engagement of key stakeholders throughout the research process is critical to promoting research use in response to the global HIV pandemic. But what does this look like in practice, and what is the added value for those involved? Building on the systematic research utilization process developed by Project SOAR (Supporting Operational AIDS Research), the Population Council hosted an AIDS 2020 Virtual workshop featuring three case studies of collaboration between implementation science (IS) researchers, communities, program managers, and policymakers leading to evidence use across diverse contexts.
CASE STUDY 1: Fostering community leadership in research: Updating the Stigma Index
Too often, communities are not meaningfully enlisted in, or even made aware of, research that is intended to address their needs, compromising its relevance and use. The People Living with HIV Stigma Index is a standardized survey designed to ensure the leadership of community members in documenting HIV-related stigma and discrimination. Scott Geibel of the Population Council and Florence Anam of Médecins Sans Frontières recounted how consistent engagement of people living with HIV in the creation of the Stigma Index has informed advocacy efforts and updates to the tool itself. Since its launch in 2008, the Stigma Index has been utilized in more than 100 countries, involving 100,000 people living with HIV in the process. As Anam described “the tool, and the research process, were designed to be led and implemented by people living with HIV, so they could advocate for HIV policies and changes in service delivery.” The approach was conceptualized to build the capacity of people living with HIV in research, a critical skill that had previously been lacking, and was needed to support an evidence-based response.
She explained that when the Stigma Index was first published in Kenya, it informed the inclusion of components around confidentiality in national HIV/AIDS laws, contributing to a society that has become more supportive of testing and treatment interventions. In the more recent process of refining the Stigma Index 2.0, Geibel noted that the active collaboration between people living with HIV and research experts led directly to the development of a new and needed scale of resilience to measure positive experiences of people living with HIV. The resilience scale has since been validated and finalized, making the Stigma Index more relevant and reflective of community experiences.
CASE STUDY 2: Leveraging HIV research to inform the COVID-19 response in Kenya
In response to emergent public health crises, existing research platforms can be leveraged to quickly gather information critical to informing response efforts in real time. Timothy Abuya of the Population Council and Maureen Kimani of the Kenyan Ministry of Health discussed how ongoing partnerships led to rapid and adaptive research efforts in the wake of the COVID-19 pandemic. Abuya explained that when COVID-19 first emerged in Kenya, Population Council staff approached the Ministry to ask about their data needs. Taking advantage of ongoing Council data collection activities underway in informal settlements at the time, the Council and partners were poised to add COVID-19-specific questions to these existing survey activities to “generate quick evidence” that was shared on a weekly basis with the Ministry. While this COVID-19 research has encompassed a variety of activities “the foundation was partnering with the Ministry and being able to use that information for programming,” said Abuya. Through four rounds of community surveys and the creation of a dashboard to track the work of partners and health volunteers, important data has been used to inform public messaging, support the creation of national guidance, and draw attention to ongoing community activities and evolving needs.
In the context of COVID-19, Kimani reflected on the need for the Ministry of Health to rapidly mobilize, engage, and coordinate multiple partners, including donors, implementers, and local organizations. In order to create sustainable mechanisms to respond flexibly to changing public health information needs, Kimani noted the importance of integrating interventions, strengthening collaboration with local community and governance structures, and investing in local monitoring and surveillance to enhance identification of early warning signs. She noted that throughout the research process, implementing partners have a responsibility to engage local and national health systems to enhance transition and ownership of interventions. She further suggested that researchers need to closely partner with policy makers to share key findings, supporting research and dissemination activities that actively inform policy decisions and resource allocation, reducing the research to implementation lead time.
CASE STUDY 3: Reducing HIV risk for adolescent girls, young women (AGYW), and partners: Learning from the DREAMS partnership
Implementation science is essential to supporting course correction when advancing complex and novel approaches to reach uniquely vulnerable populations. Sanyukta Mathur of the Population Council and Janet Saul of the Office of the Global AIDS Coordinator examined how partnership and research use have informed the creation and implementation of DREAMS. Across varied 15 country contexts and diverse sub-populations of AGYW and their partners, IS research, along with data from monitoring systems and impact evaluations, has supported real-time program refinement. “In working with our DREAMS research and evaluation partners, we have you present data to us, the country teams, implementing partners, and government partners in country so everyone has the same information," recounted Saul.
Ongoing data collection and dialogue with country teams has led to critical program adjustments, including renewed attempts to systematically identify and reach the most vulnerable adolescent girls, recruit and retain older program participants (ages 18-25), and develop guidance to effectively implement a layered package of interventions. Direct feedback from AGYW has also led to changes in program design, including a heightened focus on inclusion of evidence-based economic generation opportunities for young women to increase their participation.
Across these case studies, stakeholders and community members worked in close partnership with researchers from start to finish. Stakeholder consultation in creating a research agenda and thoughtful, ongoing collaboration facilitated ownership and investment in the results. In practice, meaningful engagement in the research process is an iterative and time-intensive process that necessitates strong relationships. However, as illustrated by these examples, this approach can lead to the collection of high-quality, relevant, and timely data to inform policies, strengthen programs, and improve research methods and measures.
Despite important progress made to date in controlling the HIV pandemic, it has been noted that even prior to the emergence of COVID-19, the global community was not on track to meet 90-90-90 targets. In the wake of evolving and intersecting pandemics that disproportionately affect vulnerable populations, it is more important than ever that researchers pursue implementation science and use of findings to ensure programs and policies are evidence-based. In these unprecedented times, researchers must remain committed to ensuring science leads the global response to infectious disease.