Developing and Testing a Method for Engagement in Research Using WhatsApp

African immigrants are one of the fastest-growing immigrant populations in the United States but remain underrepresented in clinical, public health, and patient-centered research. Barriers to engagement include distrust of research institutions, concerns about privacy and immigration status, language differences, stigma, limited research literacy, and a lack of culturally appropriate engagement approaches. These barriers may limit opportunities for African immigrants to influence the questions, methods, implementation, interpretation, and dissemination of research relevant to their communities.

WhatsApp is widely used by African immigrant communities for communication, information sharing, and social support. Although researchers have used WhatsApp for participant recruitment and data collection, less is known about how the platform can support sustained and meaningful engagement across the research lifecycle. There is also no standard protocol to guide researchers in using WhatsApp for research engagement with African immigrant communities.

This mixed-methods study will develop and pilot the WhatsApp Immigrant-Centered Research Engagement (WI-CARE) protocol. WI-CARE will provide structured guidance for using WhatsApp features to support culturally and linguistically appropriate communication, privacy, trust, inclusion, and participation in research. The study is guided by the Unified Theory of Acceptance and Use of Technology and measures of patient engagement in research.

Aim 1 will identify the WhatsApp features and engagement practices that facilitate or hinder research engagement. Adult African immigrants will complete a survey about their experiences with WhatsApp, preferences for research communication and participation, perceived barriers, trust, privacy, and factors affecting their willingness to use WhatsApp for research engagement. Focus groups will provide additional information about participants' experiences and recommendations.

Aim 2 will use findings from Aim 1 to develop the WI-CARE protocol through a participatory process led by the study team, which includes African immigrant partner organizations and academic researchers. The protocol will address onboarding, informed consent, communication, privacy and confidentiality, multilingual engagement, facilitation, technical support, data collection, interpretation of findings, and dissemination. African immigrant patients and other experts will review the draft protocol for feasibility, usability, cultural relevance, and adaptability. Their feedback will guide iterative revisions.

Aim 3 will pilot WI-CARE among adult African immigrants residing in Connecticut, Maine, Massachusetts, Minnesota, Pennsylvania, and Rhode Island. Approximately 300 participants will be enrolled in a centralized WhatsApp community. Participants will be invited to opt into structured scenarios based on their interests and availability. The scenarios will simulate activities conducted during different stages of research, including onboarding and consent, research planning, recruitment, data collection, interpretation of findings, and dissemination.

Within each scenario, trained facilitators will use the WI-CARE protocol to guide participants through research-related activities. Participants will then evaluate the clarity, accessibility, cultural relevance, privacy, and usability of the engagement process. WhatsApp activity metrics, surveys, and individual interviews will be used to assess participation, retention, task completion, engagement quality, trustworthiness, acceptability, usability, and feasibility. The study will also examine whether engagement experiences differ according to participant characteristics and geographic location.

Quantitative and qualitative findings will be integrated to identify areas of agreement, differences across participant groups, and aspects of the protocol requiring revision. The final WI-CARE protocol will provide an evidence-informed approach for using WhatsApp to engage African immigrant communities throughout the research process.

• WI-CARE Protocol (Behavioral): WI-CARE is a culturally and linguistically tailored protocol for engaging African immigrants in research through WhatsApp. The protocol provides structured procedures for onboarding and informed consent, communication, privacy and confidentiality, facilitation, technical support, and participation in research activities. Trained facilitators will use WI-CARE to guide participants through scenarios representing research planning, recruitment, data collection, interpretation of findings, and dissemination. Participants may communicate through text, voice notes, audio or video calls, surveys, polls, group discussions, and multimedia features. Participants will provide feedback on the clarity, accessibility, cultural relevance, acceptability, usability, and trustworthiness of the engagement process.

Primary outcomes

• Quality of Research Engagement [6 months]: Participant-reported quality of engagement will be assessed using the 22-item Patient Engagement in Research Scale (PEIRS-22). Item responses will be scored according to the PEIRS-22 scoring guidance. Higher scores indicate greater perceived quality of engagement.
• Engagement Context [12 months]: Engagement context will be assessed using survey items based on the Unified Theory of Acceptance and Use of Technology. Separate scores will be calculated for performance expectancy, effort expectancy, social influence, facilitating conditions, behavioral intention, and use behavior. These constructs assess the acceptability, usability, feasibility, and perceived effectiveness of WI-CARE. Each construct will be scored according to the final survey scoring procedures, with higher scores indicating a more favorable assessment of WI-CARE.

Secondary outcomes

• WI-CARE Acceptability [6 months]: Acceptability will be assessed through exit-survey items measuring participants' satisfaction with WI-CARE and the extent to which they consider the protocol appropriate for engaging African immigrants in research. Responses will be summarized using item-level frequencies and mean or median scores, as appropriate. Higher ratings indicate greater acceptability.
• WI-CARE Usability [6 months]: Usability will be assessed through survey items informed by the Unified Theory of Acceptance and Use of Technology. Items will examine the ease of learning and using WI-CARE procedures and WhatsApp features, the clarity of scenario instructions, and the effort required to participate. Responses will be combined according to the final survey scoring procedures. Higher ratings indicate greater perceived usability.
• Scenario Participation Rate [6 months]: The scenario participation rate will be calculated as the number of enrolled participants who enter and participate in each WI-CARE scenario divided by the number of enrolled participants invited to that scenario, multiplied by 100. Rates will be reported for each scenario and across the pilot.
• Scenario Task Completion Rate [At the completion of each scenario, up to approximately 6 months after enrollment]: The task completion rate will be calculated as the number of participants who complete the required activity within each WI-CARE scenario divided by the number of participants who begin that scenario, multiplied by 100. Activities may include completing a survey, participating in a group discussion, reviewing research findings, or providing feedback.
• Participant Retention Rate [At the end of the WI-CARE pilot, approximately 6 months after enrollment]: The retention rate will be calculated as the number of enrolled participants who complete the final WI-CARE evaluation divided by the total number enrolled in the WI-CARE WhatsApp Community, multiplied by 100.
• Trustworthiness of the Engagement Process [At the end of the WI-CARE pilot, approximately 6 months after enrollment]: Participant perceptions of trustworthiness will be assessed through exit-survey items addressing transparency, respect, privacy, confidentiality, data security, and confidence in the WI-CARE engagement process. Responses will be summarized using item-level frequencies and mean or median scores, as appropriate. Higher ratings indicate greater perceived trustworthiness.
• Frequency and Type of Participant Interactions [During each WI-CARE scenario, up to 6 months after enrollment]: WhatsApp analytics will be used to calculate the number of participant interactions during each scenario. Interactions will be summarized overall and by communication type, including group messages, one-on-one text messages, audio notes, and media sharing.

Sex: All, ages: 18 Years to any, accepts healthy volunteers

Inclusion Criteria:

Aim 1 survey and focus group participants:

* Aged 18 years or older
* Born in a sub-Saharan African country
* Currently residing in the United States
* Able to read and speak English, French, or Kiswahili
* Able and willing to provide informed consent

Aim 2 expert panel participants:

* Aged 18 years or older
* Currently residing in the United States
* Able to read and speak English, French, or Kiswahili
* Able and willing to provide informed consent
* Has relevant knowledge, professional experience, or lived experience related to African immigrant health or digital research engagement

Aim 3 pilot participants:

* Aged 18 years or older
* Born in a sub-Saharan African country
* Currently residing in Connecticut, Maine, Massachusetts, Minnesota, Pennsylvania, or Rhode Island
* Able to read and speak English, French, or Kiswahili
* Has access to an internet-connected device that can use WhatsApp
* Able and willing to join the WI-CARE WhatsApp Community and participate in study activities conducted through WhatsApp
* Able and willing to provide informed consent

Exclusion Criteria:

* Younger than 18 years of age
* Unable or unwilling to provide informed consent
* Does not meet the eligibility requirements for the applicable study component

• Aidoo-Frimpong G, Turner D, Collins RL, Ajiboye W, Agbemenu K, Nelson LE. WhatsApp-propriate? Exploring "WhatsApp" as a Tool for Research Among Ghanaian Immigrants in the United States. J Racial Ethn Health Disparities. 2024 Aug;11(4):1956-1963. doi: 10.1007/s40615-023-01664-9. Epub 2023 Jun 7. PMID 37285049
• Akyirem S, Ekpor E, Aidoo-Frimpong GA, Salifu Y, Nelson LE. Online interviews for qualitative health research in Africa: a scoping review. Int Health. 2024 Jan 2;16(1):4-13. doi: 10.1093/inthealth/ihad010. PMID 36786169

• Gloria AIDOO-FRIMPONG, PhD, MPH, MA, Principal investigator, University at Buffalo