Symposium 9: The Health Equity SIG presents: “Listen, Then Build”: Stakeholder-Engaged Intervention Development to Advance Health Equity

Diverse and underserved communities hold deep knowledge of the challenges that must be addressed and the assets and strengths that must be brought to bear to meaningfully improve health outcomes. Recognizing that the people closest to our most vexing problems are also those closest to solutions, involving stakeholders early in the design of new interventions is increasingly accepted as a best practice. Yet stakeholder engagement takes many forms, ranging in methods, intensity, breadth, and diversity of individuals sought to inform behavioral science. Aligned with the conference theme “Context Matters: Bridging Perspectives in Behavioral Medicine," this symposium will explore these aspects of stakeholder-engaged preparatory work to design innovative interventions to address health inequities. Presenters will highlight their work on a range of intervention types and settings, including digital mental health interventions, community health, and health systems. Presenters will describe ways they identified key stakeholders such as community leaders, peer groups, patients, and healthcare providers; and processes for establishing productive communication. The symposium will offer insights on varied methods for soliciting stakeholder input; how stakeholder input shaped the intervention approach; challenges and successes related to equitable power-sharing in key partnerships; strategies for developing and sustaining future stakeholder partnerships; and expected and unanticipated outcomes.

Chair Susan Brown, PhD will open the session by inviting presenters to consider their overarching approach to stakeholder engagement and lessons learned through the course of their work. Following four presentations, Discussant and presenter Robert Newton, PhD will distill common themes and reflect on the ways in which these issues can inform future stakeholder-engaged work that advances health equity in behavioral medicine.

Presenter Robert Newton, PhD, will discuss the process of partnering with community leaders to develop a novel program for African American fathers/father figures and their children. Aims: African American children are at risk for developing chronic disease due to low levels of physical activity. Emerging research is beginning to show that African American fathers play an active role in their children’s physical activity behavior, although they also face unique barriers. These barriers occur at multiple levels of influence and therefore studies intervening at various levels are needed. The goal of the study is to use a community engaged research approach to create a multi-level physical activity promotion intervention for African American children in which fathers/father figures serve as the participating parent. Methods: The project was written in collaboration with a community-based organization that seeks to empower African American men to become better fathers/father figures within their communities. The study will occur in three phases. Phase I involves conducting focus groups with African American fathers/father figures to determine the importance of physical activity and to identify the necessary intervention components that will lead to success. Phase II involves adaptation of an existing intervention. Phase III involves conducting a small randomized clinical trial comparing a control group to two multilevel interventions. Results: The project is ongoing. Preliminary focus group data reveal fathers/father figures view physical activity as important for their children and they report being involved in their children’s activity. The community-academic partnership has allowed the community organization to create physical activity programming that is being seamlessly integrated into the organization’s existing activities. This physical activity programming, at the community level, will be offered to one of the multi-level intervention groups. Implications: The study is based on an existing academic-community partnership. The partnership allows trust to be built with the African American father community. The academic-community partnership also resulted in additional funding that will provide the community organization with additional physical activity programming resources.

Presenter Biblia Cha, PhD, MPH will discuss the role of peer stakeholders in the development and implementation of a digital mental health intervention, including challenges encountered. Aims: Digital mental health interventions (DMHIs) are increasingly being used to address the global mental health epidemic, but peer integration into their design and development is more limited. Help@Hand was a multi-site project in California that sought to integrate peers (persons with lived experience overcoming mental health challenges) in all stages of DMHI development and implementation. In this study, we used the Consolidated Framework for Implementation Research (CFIR) to frame challenges experienced by participating sites. Methods: Data were collected from key informants within 11 Help@Hand sites via online surveys and interviews between Summer 2020 and Fall 2022. Results: One hundred and three quarterly surveys and 39 bi-annual interviews were completed. A few challenges were specifically related to the Innovation itself, such as recruiting and hiring qualified peers and peer input not being integrates. Most challenges related to the Implementation Process, including challenges with communication and collaboration between sites, vendors, project management, and other sites; the need for translating intervention materials; and delays with device distribution. Inner Setting were largely related to issues with building and managing the peer workforce and ensuring there were enough peer staff for the project. Outer Setting challenges related to technology and COVID-19, and funding uncertainty bridged the Inner and Outer Settings. Implications: Sites integrating peer input into DMHI design and development can expect to encounter a range of challenges across the CFIR domains. Our findings indicate recruiting and retaining qualified peers and ensuring technology access and digital literacy are critical for providing a foundation for peer co-creation and implementation of DMHIs, as are organizational capacity to provide clear communication, project management, and structure to integrate peers into local workplaces. Internally, peer integration might be facilitated by proactive planning around recruitment and retention of peer workers, while challenges from the outer context might be ameliorated through establishing clear organizational roles and channels of communication.

Presenter Sarah Haynes, PhD, MPH will discuss the process of gathering input from community and patient stakeholders to co-design research on improving implementation of doula care in health system settings. Aims: Comprehensive community doula care—which includes the support of a trained doula throughout a person’s pregnancy, labor and delivery, and postpartum period—is an evidence-based strategy for improving maternal and infant health outcomes. However, rigorous evidence is needed that evaluates outcomes that matter most to individuals and families. There also exist evidence gaps regarding effective implementation strategies for doula care and contextual factors affecting implementation. We conducted a multilevel community engagement process to co-design research studies that address questions related to community doula care. Methods: Using an iterative approach to identify and engage stakeholders, we conducted listening sessions in-person and on Zoom in English and Spanish with mothers who had given birth in the past 5 years. We recruited participants through community organizations, clinics in the Sacramento, CA region, and partnerships in other states. Each session had several focused discussion topics. Results were summarized and sent back to all participants for further input. We also conducted workshops with mixed groups of stakeholders including mothers, community doulas, OB/GYNs, labor and delivery nurses, and leaders of community organizations involved in maternal health. We used nominal group technique in workshops to refine priorities, research questions, and key outcomes. Results and Implications: Our engagement process resulted in a set of priority research questions and key outcomes. We also made key study design decisions in collaboration with stakeholders. To date, four extramural proposals have been submitted based on these priorities and study designs. Our project demonstrates the importance of early stakeholder engagement in the study conception phase to ensure patient-centeredness and optimize study design.

Leading with the mantra “listen first, then build,” presenter Ijeoma Uche, MPH will discuss the process of soliciting input from over 400 stakeholders to develop Birth By Us, a community-led digital intervention seeking to reimagine maternal health during pregnancy and the postpartum period. Maternal mortality rates in the United States are alarmingly high, disproportionately affecting Black women and birthing people. Traditional healthcare systems are failing to provide equitable care, leaving many marginalized individuals feeling disempowered and isolated throughout their pregnancy and postpartum journeys. Recognizing the urgent need for change, our diverse team from multiple community and research and institutions—including clinicians, researchers, data and computer scientists, a medical student, a nurse, and a doula—is reimagining maternal health through a community-led digital intervention, Birth By Us. Our conversations with 416 stakeholders, conducted through focus groups of up to five participants and individual interviews both in person and online, took place between the summer of 2021 and the spring of 2023. These discussions involved a diverse group of birthing professionals, administrators, and parents across the US —recruited through mutual networks, Meta ads, and referrals—uncovered systemic deficiencies and barriers hindering equitable care provision. We heard firsthand accounts of dismissive attitudes, lack of cultural competence, inadequate postpartum support, and key failings highlighting the need to translate current literature and learnings from years of systematic failures into innovative solutions. Birth By Us aims to bridge the gap between existing research and actionable solutions, empowering women of color to take control of their pregnancy and postpartum experiences while giving providers and hospital systems the necessary insights and support to improve care and reduce maternal complications. Future research will focus on rigorously testing the effectiveness and implementation of this approach in healthcare settings. By leveraging technology and community engagement, we seek to reshape the narrative around maternal health and advocate for systemic change. Birth By Us represents not only a tool for individual empowerment but an example of a catalyst for broader healthcare reform, focusing on translational community-led research into real-time solutions that ensure every individual receives equitable and dignified healthcare.

Chair - Susan Brown   Student
University of California, Davis

Presenter - Biblia Cha   Student
University of California, Irvine

Presenter - Sarah Haynes PhD, MPH  Student
University of California, Davis

Presenter - Ijeoma Uche MPH  Student
University of California, Davis

Discussant - Robert Newton   Student
Pennington Biomedical Research Center

Diverse and underserved communities hold deep knowledge of the challenges that must be addressed and the assets and strengths that must be brought to bear to meaningfully improve health outcomes. Recognizing that the people closest to our most vexing problems are also those closest to solutions, involving stakeholders early in the design of new interventions is increasingly accepted as a best practice. Yet stakeholder engagement takes many forms, ranging in methods, intensity, breadth, and diversity of individuals sought to inform behavioral science. Aligned with the conference theme “Context Matters: Bridging Perspectives in Behavioral Medicine," this symposium will explore these aspects of stakeholder-engaged preparatory work to design innovative interventions to address health inequities. Presenters will highlight their work on a range of intervention types and settings, including digital mental health interventions, community health, and health systems. Presenters will describe ways they identified key stakeholders such as community leaders, peer groups, patients, and healthcare providers; and processes for establishing productive communication. The symposium will offer insights on varied methods for soliciting stakeholder input; how stakeholder input shaped the intervention approach; challenges and successes related to equitable power-sharing in key partnerships; strategies for developing and sustaining future stakeholder partnerships; and expected and unanticipated outcomes.

Chair Susan Brown, PhD will open the session by inviting presenters to consider their overarching approach to stakeholder engagement and lessons learned through the course of their work. Following four presentations, Discussant and presenter Robert Newton, PhD will distill common themes and reflect on the ways in which these issues can inform future stakeholder-engaged work that advances health equity in behavioral medicine.

Presenter Robert Newton, PhD, will discuss the process of partnering with community leaders to develop a novel program for African American fathers/father figures and their children. Aims: African American children are at risk for developing chronic disease due to low levels of physical activity. Emerging research is beginning to show that African American fathers play an active role in their children’s physical activity behavior, although they also face unique barriers. These barriers occur at multiple levels of influence and therefore studies intervening at various levels are needed. The goal of the study is to use a community engaged research approach to create a multi-level physical activity promotion intervention for African American children in which fathers/father figures serve as the participating parent. Methods: The project was written in collaboration with a community-based organization that seeks to empower African American men to become better fathers/father figures within their communities. The study will occur in three phases. Phase I involves conducting focus groups with African American fathers/father figures to determine the importance of physical activity and to identify the necessary intervention components that will lead to success. Phase II involves adaptation of an existing intervention. Phase III involves conducting a small randomized clinical trial comparing a control group to two multilevel interventions. Results: The project is ongoing. Preliminary focus group data reveal fathers/father figures view physical activity as important for their children and they report being involved in their children’s activity. The community-academic partnership has allowed the community organization to create physical activity programming that is being seamlessly integrated into the organization’s existing activities. This physical activity programming, at the community level, will be offered to one of the multi-level intervention groups. Implications: The study is based on an existing academic-community partnership. The partnership allows trust to be built with the African American father community. The academic-community partnership also resulted in additional funding that will provide the community organization with additional physical activity programming resources.

Presenter Biblia Cha, PhD, MPH will discuss the role of peer stakeholders in the development and implementation of a digital mental health intervention, including challenges encountered. Aims: Digital mental health interventions (DMHIs) are increasingly being used to address the global mental health epidemic, but peer integration into their design and development is more limited. Help@Hand was a multi-site project in California that sought to integrate peers (persons with lived experience overcoming mental health challenges) in all stages of DMHI development and implementation. In this study, we used the Consolidated Framework for Implementation Research (CFIR) to frame challenges experienced by participating sites. Methods: Data were collected from key informants within 11 Help@Hand sites via online surveys and interviews between Summer 2020 and Fall 2022. Results: One hundred and three quarterly surveys and 39 bi-annual interviews were completed. A few challenges were specifically related to the Innovation itself, such as recruiting and hiring qualified peers and peer input not being integrates. Most challenges related to the Implementation Process, including challenges with communication and collaboration between sites, vendors, project management, and other sites; the need for translating intervention materials; and delays with device distribution. Inner Setting were largely related to issues with building and managing the peer workforce and ensuring there were enough peer staff for the project. Outer Setting challenges related to technology and COVID-19, and funding uncertainty bridged the Inner and Outer Settings. Implications: Sites integrating peer input into DMHI design and development can expect to encounter a range of challenges across the CFIR domains. Our findings indicate recruiting and retaining qualified peers and ensuring technology access and digital literacy are critical for providing a foundation for peer co-creation and implementation of DMHIs, as are organizational capacity to provide clear communication, project management, and structure to integrate peers into local workplaces. Internally, peer integration might be facilitated by proactive planning around recruitment and retention of peer workers, while challenges from the outer context might be ameliorated through establishing clear organizational roles and channels of communication.

Presenter Sarah Haynes, PhD, MPH will discuss the process of gathering input from community and patient stakeholders to co-design research on improving implementation of doula care in health system settings. Aims: Comprehensive community doula care—which includes the support of a trained doula throughout a person’s pregnancy, labor and delivery, and postpartum period—is an evidence-based strategy for improving maternal and infant health outcomes. However, rigorous evidence is needed that evaluates outcomes that matter most to individuals and families. There also exist evidence gaps regarding effective implementation strategies for doula care and contextual factors affecting implementation. We conducted a multilevel community engagement process to co-design research studies that address questions related to community doula care. Methods: Using an iterative approach to identify and engage stakeholders, we conducted listening sessions in-person and on Zoom in English and Spanish with mothers who had given birth in the past 5 years. We recruited participants through community organizations, clinics in the Sacramento, CA region, and partnerships in other states. Each session had several focused discussion topics. Results were summarized and sent back to all participants for further input. We also conducted workshops with mixed groups of stakeholders including mothers, community doulas, OB/GYNs, labor and delivery nurses, and leaders of community organizations involved in maternal health. We used nominal group technique in workshops to refine priorities, research questions, and key outcomes. Results and Implications: Our engagement process resulted in a set of priority research questions and key outcomes. We also made key study design decisions in collaboration with stakeholders. To date, four extramural proposals have been submitted based on these priorities and study designs. Our project demonstrates the importance of early stakeholder engagement in the study conception phase to ensure patient-centeredness and optimize study design.

Leading with the mantra “listen first, then build,” presenter Ijeoma Uche, MPH will discuss the process of soliciting input from over 400 stakeholders to develop Birth By Us, a community-led digital intervention seeking to reimagine maternal health during pregnancy and the postpartum period. Maternal mortality rates in the United States are alarmingly high, disproportionately affecting Black women and birthing people. Traditional healthcare systems are failing to provide equitable care, leaving many marginalized individuals feeling disempowered and isolated throughout their pregnancy and postpartum journeys. Recognizing the urgent need for change, our diverse team from multiple community and research and institutions—including clinicians, researchers, data and computer scientists, a medical student, a nurse, and a doula—is reimagining maternal health through a community-led digital intervention, Birth By Us. Our conversations with 416 stakeholders, conducted through focus groups of up to five participants and individual interviews both in person and online, took place between the summer of 2021 and the spring of 2023. These discussions involved a diverse group of birthing professionals, administrators, and parents across the US —recruited through mutual networks, Meta ads, and referrals—uncovered systemic deficiencies and barriers hindering equitable care provision. We heard firsthand accounts of dismissive attitudes, lack of cultural competence, inadequate postpartum support, and key failings highlighting the need to translate current literature and learnings from years of systematic failures into innovative solutions. Birth By Us aims to bridge the gap between existing research and actionable solutions, empowering women of color to take control of their pregnancy and postpartum experiences while giving providers and hospital systems the necessary insights and support to improve care and reduce maternal complications. Future research will focus on rigorously testing the effectiveness and implementation of this approach in healthcare settings. By leveraging technology and community engagement, we seek to reshape the narrative around maternal health and advocate for systemic change. Birth By Us represents not only a tool for individual empowerment but an example of a catalyst for broader healthcare reform, focusing on translational community-led research into real-time solutions that ensure every individual receives equitable and dignified healthcare.

Chair - Susan D. Brown, PhD, FSBM,
University of California, Davis

Presenter - Biblia Cha, PhD, MPH,
University of California, Irvine

Presenter - Sarah Haynes, PhD, MPH,
University of California, Davis

Presenter - Ijeoma Uche, MPH,
University of California, Davis

Discussant - Robert L. Newton, Jr., PhD, FSBM,
Pennington Biomedical Research Center