PCORI-funded project leverages WhatsApp to center African immigrants in health research

BUFFALO, N.Y. – African immigrants are among the fastest-growing immigrant populations in the U.S., numbering over 2.3 million. While they account for a large number of newcomers to the country, their unique migration histories and health profiles are often ignored in health research.

A University at Buffalo health equity researcher is a co-principal investigator on a Patent-Centered Outcomes Research Institute (PCORI)-funded research project that aims to address this critical gap by leveraging the popular social media tool WhatsApp to involve underrepresented communities as full partners in shaping health studies.

“African immigrants are vital contributors to the U.S. workforce, faith communities and health systems, with many serving as nurses, teachers, entrepreneurs and community leaders,” says Gloria Aidoo-Frimpong, PhD, assistant professor in the Department of Epidemiology and Environmental Health in UB’s School of Public Health and Health Professions.

“Despite this, African immigrants remain largely invisible in national health research, data systems and policy discussions. This invisibility has serious implications for health equity,” adds Aidoo-Frimpong, the co-PI on the project with Chioma Nnaji of the Boston-based Multicultural AIDS Coalition.

Both are members of the leadership team for the African Immigrant Health Research Collaborative (AIHRC), a national, community-led network that brings together African immigrant-serving organizations, researchers and community advocates to advance health equity through research rooted in lived experience.

AIHRC’s current leadership includes the Africans for Improved Access program at the Multicultural AIDS Coalition (MA), Office of Maine Refugee Services (ME), Multicultural Community Family Services (PA), African Alliance of Rhode Island (RI), Lead the Way Minnesota (MN), and Integrated Refugee and Immigrant Services (CT).

PCORI is providing AIHRC with nearly $2 million for the project.

Health research often categorizes African immigrants broadly under the Black/African American category, which masks their unique migration histories, health profiles and experiences within health systems, according to Aidoo-Frimpong.

She adds that research shows African immigrant populations have increasing rates of chronic and infectious diseases, including cardiovascular disease, diabetes, hepatitis B and HIV. They also face structural and cultural barriers to care, including language barriers, immigration-related stress and stigma.

“Mistrust of research, rooted in legacies of exploitation and exclusion, further limits participation in studies that guide health policy and practice,” says Aidoo-Frimpong. “This project directly addresses those gaps by developing and testing a WhatsApp-based engagement model that meets communities where they are.”

Instead of treating African immigrants solely as study participants, this project will position them more as co-researchers. The WhatsApp Immigrant-Centered Research Engagement Protocol will be developed by gathering insights from African immigrant patients, caregivers, community leaders, health care providers and researchers through surveys, focus groups and expert panels.

This protocol will then be tested through scenario-based activities that place patient partners in real-world engagement situations, ranging from developing partnership agreements and shaping research questions to interpreting data and guiding dissemination strategies. Through surveys and focus groups, researchers will gain insight into which WhatsApp features build trust, support collaboration and reduce participation barriers for African immigrants.

WhatsApp is a free, encrypted messaging and calling app that enables smartphone users to send text messages, make voice and video calls and share videos and photos. It was selected for this study because it’s a tool that is already deeply woven into African immigrant communities.

“Our goal is to strengthen the science of engagement by generating practical, evidence-based guidance on how digital tools like WhatsApp can be used to meaningfully involve underrepresented communities in patient-centered research,” says Aidoo-Frimpong, a native of Ghana.

“Stronger engagement methods mean stronger evidence — and stronger evidence means better decisions about prevention, diagnosis, and treatment,” adds Julius Kolawole, co-founder and executive director of the African Alliance of Rhode Island and AIHRC partner. “This is about trust, transparency, and tools communities can use.”

Aidoo-Frimpong says the team’s work is important because engagement methods are often developed without considering cultural or technological contexts.

“By testing WhatsApp as a research engagement tool, this project will fill a critical gap in the evidence base, providing a scalable, culturally relevant model that can inform PCORI-funded studies and other research initiatives seeking to engage diverse communities,” she says.

“Many past and current research projects have not really been ‘patient-centered,’” says Portia Kamara, executive director at the Multicultural Community Family Services and AIHRC partner.

“They have neither been patient-centered driven, nor patient-centered, as the ‘patient’ was never made to be fully/actively involved in the process of research from the preplanning to questions formulation, implementation, data analysis to report dissemination. This award has the potential to expand access to culturally responsive health resources, helping African immigrant families thrive while also strengthening equity across the broader society.”

The project moves beyond using social media as merely a communication channel – for example, recruiting participants or collecting data – and instead treats it as an engagement infrastructure.

“That distinction is what makes this work novel,” Aidoo-Frimpong says. “Historically, digital tools have been used in research to extend reach, but rarely to share power. Our study takes a different approach: It adapts WhatsApp to enable two-way dialogue, decision-making, and reflection across all stages of research.”

Ultimately, the goal is to reframe the science of engagement by empowering underrepresented communities to be more active in research about them.

“In many ways, this project is about rewriting what inclusion looks like in practice,” says Aidoo-Frimpong. “It shows that when research methods are co-created and rooted in the ways people already connect and care for one another, the outcomes are not just more relevant, they are transformative for the science, for institutions, and for the communities that make that science possible.”