At The EQUATOR (ATtaining EQUity of Access TO Research)
Abstract
Everybody should have access to evidence-based information about the benefits and risks of any medication they are given. This must be available in a format that is accessible and understandable to those who require treatments. However, in many situations the evidence to inform risk‒benefit discussions is not available.
The ATtaining EQUity of Access TO Research (At The EQUATOR) programme aims to address these gaps through community engagement, participatory research, priority setting, and co-creation activities. We have embedded such activities throughout two clinical trials: Maternal and Infant Lactation PharmacoKinetics (MILK); and Vulnerable population TUberculosis AntiretroviraL (VirTUAL). We have also developed mathematical approaches to understand how drugs can be used most safely in complex and understudied populations; established a regional specialist network of pharmacokinetic modellers; and developed locally relevant resources to explain these techniques simply at community and stakeholder levels.
Introduction
Makerere University’s Infectious Diseases Institute (IDI) is at the forefront of finding solutions to infectious diseases not only in Uganda but across Africa. IDI is dedicated to driving impactful research that advances knowledge and brings tangible changes in policy and practice. Through At The EQUATOR, we work with grassroots organizations, including Hoima district people living with HIV/AIDS (HOPLA) Networks Uganda, Positive Women with Disabilities Uganda (POWODU), and the Community Health and Information Network (CHAIN), which are well versed with the people, culture, and political environment to better implement innovation on the ground. We host a quarterly community advisory board (CAB); lead co-creation projects at the community level to produce regionally appropriate communication materials; have led participatory research exploring appropriate research-related language in five Ugandan languages; and have directed several films with a team of local community members. We ensure that a multifaceted approach to community engagement surrounds all research activities, to increase inclusivity. Recognizing the importance of ‘demystifying’ clinical trials and pharmacokinetic modelling to those who need to make decisions about, or based upon, our research findings, we established the Ugandan Chapter of Pharmacometrics Africa to form a vibrant, sustainable research community. This also increases equity of access to research careers.
Who should benefit?
It is essential to understand safe, effective use of medications in the populations who will receive them. However, most clinical trials have strict eligibility criteria meaning that some patient groups are excluded from participation. Furthermore, many clinical trials are conducted by research institutions within cities where the population may not be representative ethnically, educationally, or socio-culturally. In Uganda, which has 56 tribes and 40 spoken languages, this has been a limitation.
Status quo clinical trials have been a strength at IDI for many years. However, community engagement has not been systematically embedded into the research, which may have perpetuated the marginalization of some communities. Through At The EQUATOR, we have built a diverse portfolio of community engagement and empowerment, participatory approaches, and co-creation of multi-modality outputs alongside MILK and VirTUAL projects, and have informed the development of institutional policy and practice at IDI.
Complex populations have sometimes been excluded from clinical trials due to a well-meaning desire to protect potentially vulnerable individuals from risk. Here, mathematical approaches to improve study design and maximize data interpretation (pharmacometrics) are of great value. Until recently, there has been limited capacity in this technique in Africa; most datasets have been exported to high-income countries for analysis and interpretation, often with limited understanding of the context and challenges ‘on the ground’ where the studies were performed. It is crucial to have pharmacometrics embedded within study teams at these sites.
Pharmacometrics Africa was established in 2018 with this overarching aim, and in 2021 we launched the Ugandan Chapter. Female researchers have been under-represented among pharmacometricians, so we have built a young and diverse workforce to provide mentorship for the next generation.
To ensure all our work uses appropriate language and terminology at the community level, we have built strategic partnerships with groups including HOPLA Networks Uganda, POWODU, and CHAIN. Ongoing dialogue and shared activities with these complementary community groups increases equity of access to research and findings.
Engagement
When forming the CAB, we followed the Uganda National Council of Science and Technology guidelines and identified priority groups including individuals with understanding of local laws, cultural values, and gender issues; peer leaders; religious leaders; representatives of the study population; the media; professionals who understand research or science issues; and community leaders. The CAB facilitates dialogue between the community and the research team by representing views and strategies on how to respectfully engage particular sections of the public. Members are given training to build capacity to share knowledge with the groups they represent to ensure a trickle-down effect.
Quarterly, we engage with HOPLA Networks Uganda through activities including capacity building, dissemination, and co-creation. We also draft and share guides with community health workers (CHWs) to support their health education work. A priority-setting workshop was held at CHAIN in May 2023 to ensure the research portfolio is shaped by the need to understand understudied aspects of women’s health and the use of medication, and to determine how academic researchers can better partner with communities to address these issues. This workshop identified disease-specific areas (sickle-cell disease, cancer, and viral outbreaks) and specific understudied groups (those with disabilities, linguistic minorities, and the elderly) who are often overlooked in research activities.
Some people’s experiences are systematically excluded from contemporary research for reasons including ethics, location, gender, and age. This has led to unfair exclusion of groups such as breastfeeding mothers, children, people living with disabilities (PLWD), the elderly, and communities in remote areas. We foster inclusion and engage understudied groups through collaboration and networking with our stakeholders.
Our CAB is chaired by a PLWD and for all the groups that we engage at the community level we ensure inclusion by having a balance in terms of gender, age, and ability. This ensures equal representation, and all views are respected, debated, and agreed by consensus.
To transform research culture towards greater inclusivity, healthcare and research-related gatekeepers must understand the priorities and share the vision. We frequently engage with colleagues at the Ugandan Ministry of Health, healthcare professionals, disease-specific non-governmental organizations (NGOs), and the Ugandan National Drug Authority.
Research
Through At The EQUATOR, we deliver a diverse range of activities aimed at ensuring greater inclusivity of our research, and greater accessibility for the ultimate beneficiaries: the individuals who require drug therapy. We draw on general principles of public engagement and involvement, but tailor our approaches to our environment.
We have created two new core positions within our research team. One is a Peer Mother—a young woman with lived experience of four pregnancies and breastfeeding whilst on antiretroviral medication—who provides a key interface between study participants and other research team members, and liaises with community groups to ensure inclusivity. The other is a Public Engagement Officer employed through a Wellcome Trust-funded, At The EQUATOR grant.
Our quarterly CAB has a specific focus on maternal and child health. Representatives include faith, cultural, and local government leaders, peer mothers, and health-centre representatives.
We have developed various information, education and communication (IEC) materials including a quarterly newsletter for community leaders and other stakeholders, project brochures, posters, and T-shirts with ‘call-to-action’ messages.
Following research on medication use in breastfeeding, we worked with CHWs to co-create IEC materials in Hoima district. Outputs included dramatic photography, posters, and job aids. These were translated into local languages to ensure the information is impactful and community owned.
We explored locally preferred terminology for aspects of female reproductive life in five local Ugandan languages, to ensure our communications are clear and sensitive.
Recognizing the need for interactive, visual representation of concepts, we expanded the use of film, photography, and drama. The artists represent diverse local communities and offer unique perspectives into healthcare and research.
To enable greater interaction between communities and researchers, and to ensure related communications are clear at community level, we established a pharmacometrics group within Uganda in partnership with Pharmacometrics Africa.
To ensure our results are clear and accessible, we are developing a suite of films and short lectures to explain our methods and results in simple language.
