Using a CBPR Approach to Guide Successful Recruitment for an Online Questionnaire: The Measurement Approaches to Partnership Success (MAPS) Case Study.

The Measurement Approaches to Partnership Success (MAPS) study team effectively used a community-based participatory research (CBPR) approach to recruit 55 long-standing CBPR partnerships to participate in an online questionnaire to assess factors associated with partnership success. Our recruitment was guided by interconnected values of collaboration, transparency, and relationship-building to maintain fidelity to CBPR principles throughout the process. We operationalized these values into a series of strategies to recruit partnerships and sustain their involvement, including establishing primary points of contact, offering incentives for completion, personalizing recruitment materials, and practicing flexibility in our approach. We aim to inform public health researchers on the strategies that enabled our team to achieve 100% of our study recruitment goal, with the intent that our recommendations can be applied by others to enhance their recruitment efforts and reach their data collection goals for future public health research.

Say Yes! COVID Test: A Health Communication Campaign to Encourage Use of Rapid, At-Home Antigen Testing in Underserved and Historically Marginalized Communities.

This paper describes a robust health communication campaign that supported Say Yes! COVID Test, the first National Institutes of Health (NIH)-sponsored initiative promoting community-wide, at-home, rapid antigen testing for severe acute respiratory syndrome-coronavirus 2 (SARS-CoV-2), the cause of the COVID-19 pandemic. The primary goals of the health communication campaign were to promote awareness of the program among local residents, facilitate test kit distribution, and encourage frequent test kit use. To plan and implement the campaign, the team applied principles of social marketing. The populations of focus were adult residents of selected communities in North Carolina (Greenville, Pitt County) and Tennessee (Chattanooga, Hamilton County), with an emphasis on underserved and historically marginalized populations. Following an accelerated planning phase, the campaign included digital, out-of-home, television, and radio advertising, in addition to public relations and organic social media. Collectively, this campaign coupled with our grassroots community engagement efforts facilitated the distribution of 66 035 test kits across both communities, or more than 1.6 million at-home tests. Facebook ads were the most successful in driving online test kit orders (7.9% conversion rate in Pitt County; 8.1% conversion rate in Chattanooga), although employing a variety of marketing channels enabled reach across multiple subpopulations. Market research data indicated high program awareness but low uptake in testing. Lessons learned from campaign planning and implementation can inform future public health initiatives, including selecting the appropriate marketing mix to facilitate awareness, and collaborating with community partners and local health departments to ensure successful program execution.

Increasing access and uptake of SARS-CoV-2 at-home tests using a community-engaged approach.

Inequalities around COVID-19 testing and vaccination persist in the U.S. health system. We investigated whether a community-engaged approach could be used to distribute free, at-home, rapid SARS-CoV-2 tests to underserved populations. Between November 18-December 31, 2021, 400,000 tests were successfully distributed via 67 community partners and a mobile unit to a majority Hispanic/Latino/Spanish population in Merced County, California. Testing before gathering (59 %) was the most common testing reason. Asians versus Whites were more likely to test for COVID-19 if they had close contact with someone who may have been positive (odds ratio [OR] = 3.4, 95 % confidence interval [CI] = 1.7-6.7). Minors versus adults were more likely to test if they had close contact with someone who was confirmed positive (OR = 1.7, 95 % CI = 1.0-3.0), whereas Asian (OR = 4.1, 95 % CI = 1.2-13.7) and Hispanic/Latino/Spanish (OR = 2.5, 95 % CI = 1.0-6.6) versus White individuals were more likely to test if they had a positive household member. Asians versus Whites were more likely to receive a positive test result. Minors were less likely than adults to have been vaccinated (OR = 0.2, 95 % CI = 0.1-0.3). Among unvaccinated individuals, those who completed the survey in English versus Spanish indicated they were more likely to get vaccinated in the future (OR = 8.2, 95 % CI = 1.5-44.4). Asians versus Whites were less likely to prefer accessing oral COVID medications from a pharmacy/drug store only compared with a doctor's office or community setting (OR = 0.3, 95 % CI = 0.2-0.6). Study findings reinforce the need for replicable and scalable community-engaged strategies for reducing COVID-19 disparities by increasing SARS-CoV-2 test and vaccine access and uptake.

Stakeholder-driven principles for advancing equity through shared measurement.

OBJECTIVE: To advance equity by developing stakeholder-driven principles of shared measurement, which is using a common set of measurable goals that reflect shared priorities across communities and systems, such as health care, public health, and human and social services. DATA SOURCES: From October 2019 to July 2021, we collected primary data from leaders in cross-systems alignment, measurement, and community engagement-including community members and community-based organization leaders-across the United States. STUDY DESIGN: In partnership with equity and community engagement experts, we conducted a mixed-methods study that included multiple formative research activities and culminated in a six-week, stakeholder-engaged modified-Delphi process. DATA COLLECTION: Formative data collection occurred through an environmental scan, interviews, focus groups, and an online survey. Principles were developed using a virtual modified Delphi with iterative rapid-analysis. Feedback on the final principles was collected through virtual focus groups, an online feedback form, and during virtual presentations. PRINCIPAL FINDINGS: We developed a set of five guiding principles. Measurement that aligns systems with communities toward equitable outcomes: (1) Requires upfront investment in communities; (2) Is co-created by communities; (3) Creates accountability to communities for addressing root causes of inequities and repairing harm; (4) Focuses on a holistic and comprehensive view of communities that highlights assets and historical context; and (5) Reflects long-term efforts to build trust. Using an equity-focused process resulted in principles with broad applicability. CONCLUSIONS: Leaders across systems and communities can use these shared measurement principles to reimagine and transform how systems create equitable health by centering the needs and priorities of the communities they serve, particularly communities that historically have been harmed the most by inequities. Intentionally centering equity across all project activities was essential to producing principles that could guide others in advancing equity.

Standardizing, harmonizing, and protecting data collection to broaden the impact of COVID-19 research: the rapid acceleration of diagnostics-underserved populations (RADx-UP) initiative.

OBJECTIVE: The Rapid Acceleration of Diagnostics-Underserved Populations (RADx-UP) program is a consortium of community-engaged research projects with the goal of increasing access to Severe Acute Respiratory Syndrome Coronavirus 2 (SARS-CoV-2) tests in underserved populations. To accelerate clinical research, common data elements (CDEs) were selected and refined to standardize data collection and enhance cross-consortium analysis. MATERIALS AND METHODS: The RADx-UP consortium began with more than 700 CDEs from the National Institutes of Health (NIH) CDE Repository, Disaster Research Response (DR2) guidelines, and the PHENotypes and eXposures (PhenX) Toolkit. Following a review of initial CDEs, we made selections and further refinements through an iterative process that included live forums, consultations, and surveys completed by the first 69 RADx-UP projects. RESULTS: Following a multistep CDE development process, we decreased the number of CDEs, modified the question types, and changed the CDE wording. Most research projects were willing to collect and share demographic NIH Tier 1 CDEs, with the top exception reason being a lack of CDE applicability to the project. The NIH RADx-UP Tier 1 CDE with the lowest frequency of collection and sharing was sexual orientation. DISCUSSION: We engaged a wide range of projects and solicited bidirectional input to create CDEs. These RADx-UP CDEs could serve as the foundation for a patient-centered informatics architecture allowing the integration of disease-specific databases to support hypothesis-driven clinical research in underserved populations. CONCLUSION: A community-engaged approach using bidirectional feedback can lead to the better development and implementation of CDEs in underserved populations during public health emergencies.

Development of a multi-component intervention to promote participation of Black and Latinx individuals in biomedical research.

INTRODUCTION: Barriers to research participation by racial and ethnic minority group members are multi-factorial, stem from historical social injustices and occur at participant, research team, and research process levels. The informed consent procedure is a key component of the research process and represents an opportunity to address these barriers. This manuscript describes the development of the Strengthening Translational Research in Diverse Enrollment (STRIDE) intervention, which aims to improve research participation by individuals from underrepresented groups. METHODS: We used a community-engaged approach to develop an integrated, culturally, and literacy-sensitive, multi-component intervention that addresses barriers to research participation during the informed consent process. This approach involved having Community Investigators participate in intervention development activities and using community engagement studios and other methods to get feedback from community members on intervention components. RESULTS: The STRIDE intervention has three components: a simulation-based training program directed toward clinical study research assistants that emphasizes cultural competency and communication skills for assisting in the informed consent process, an electronic consent (eConsent) framework designed to improve health-related research material comprehension and relevance, and a "storytelling" intervention in which prior research participants from diverse backgrounds share their experiences delivered via video vignettes during the consent process. CONCLUSIONS: The community engaged development approach resulted in a multi-component intervention that addresses known barriers to research participation and can be integrated into the consent process of research studies. Results of an ongoing study will determine its effectiveness at increasing diversity among research participants.

Strategies to Enhance Culturally Responsive Research: Community Research Recommendation Tool.

Under-representation of minorities in research hinders the ability to address persistent societal inequities. To understand how to increase the cultural responsiveness of research, a community-academic partnership conducted listening sessions and community forums with African Americans in North Carolina, Native Hawaiians in Hawai'i, and Hmong and Latino/a/x communities in Minnesota. Participants shared their concerns and desires for research, as well as generated strategies aimed at communities, researchers, and partnerships to enhance culturally responsive research practices. These findings resulted in a Community Research Recommendation Tool (CRRT) that can be used to guide community members, researchers, and partnerships as they build equitable research partnerships that honor cultural practices, account for sociopolitical contexts, and aim to redress societal inequities.

Engaging With Communities - Lessons (Re)Learned From COVID-19.

Coronavirus disease 2019 (COVID-19) has underscored longstanding societal differences in the drivers of health and demonstrated the value of applying a health equity lens to engage at-risk communities, communicate with them effectively, share data, and partner with them for program implementation, dissemination, and evaluation. Examples of engagement - across diverse communities and with community organizations; tribes; state and local health departments; hospitals; and universities - highlight the opportunity to apply lessons from COVID-19 for sustained changes in how public health and its partners work collectively to prevent disease and promote health, especially with our most vulnerable communities.

A taxonomy of impacts on clinical and translational research from community stakeholder engagement.

BACKGROUND: Community engagement is increasingly recognized as a valuable tool in clinical and translational research; however, the impact of engagement is not fully understood. No standard nomenclature yet exists to clearly define how research changes when community stakeholders are engaged across the research spectrum. This severely limits our ability to assess the value of community engagement in research. To address this gap, we developed a taxonomy for characterizing and classifying changes in research due to community engagement. METHODS: Using an iterative process, we (a) identified areas of potential impact associated with community engagement from author experience, (b) categorized these in taxonomic bins based on research stages, (c) conducted semi-structured interviews with researchers and community stakeholders, (d) validated the codebook in a sample dataset and (e) refined the taxonomy based on the validation. Community stakeholders were involved in every step of the process including as members of the primary study team. RESULTS: The final taxonomy catalogues changes into eleven domains corresponding to research phases. Each domain includes 2-4 dimensions depicting concepts within the domain's scope and, within each dimension, 2-10 elements labelling activities through which community engagement could change research. CONCLUSIONS: Community engagement has great potential to enhance clinical and translational research. This taxonomy provides a common vocabulary and framework for understanding the impact of community engagement and suggests metrics for assessing the value of community engagement in research.

Convergence Despite Divergence: Views of Academic and Community Stakeholders about the Ethics of Community-Engaged Research.

Purpose: Stakeholder engagement and community-engaged research (CEnR) are recognized as approaches necessary to promote health equity. Few studies have examined variations in stakeholder perspectives on research ethics despite the potential for meaningful differences. Our study examines the association between stakeholders' characteristics and their perception of the importance of 15 stakeholder-developed CEnR ethical statements. Design: Quantitative analysis of close-ended Delphi survey. Participants: We recruited a national, non-random, purposive sample of people who were eligible if they endorsed conducting CEnR in public health or biomedical fields. Participants were recruited from publicly available information, professional email distributions, and snowball sampling. Main Outcome Measures: We designed our close-ended Delphi survey from the results of 15 CEnR ethical statements, which were developed from a consensus development workshop with academic and community stakeholders. Results: 259 participants completed the Delphi survey. The results demonstrated that stakeholders' characteristics (affiliation, ethnicity, number of CEnR relationships, and duration of CEnR partnerships) were not associated with their perception of the importance of 15 ethical statements. Conclusions: The strong agreement among stakeholders on these broad, aspirational ethical statements can help guide partnerships toward ethical decisions and actions. Continued research about variability among stakeholders' ethics perspectives is needed to bolster the capacity of CEnR to contribute to health equity.

Proceedings of the 2017 Advancing the Science of Community Engaged Research (CEnR) Conference.

BACKGROUND: To address an urgent need to advance the field of community engaged research, faculty at Vanderbilt University Medical Center and Meharry Medical College organized the national meeting "Advancing the Science of Community Engaged Research (CEnR): Innovative & Effective Methods of Stakeholder Engagement in Translational Research, Washington, DC September 14-15, 2017 (See Additional file 1). These meetings brought together a diverse group of stakeholders to share community engaged research evidence and practical knowledge for implementing new and enhancing existing research programs. The conference series' goals were: 1) to expand the scientific basis for the community engaged research field by convening researchers, community partners, patient advocacy organizations, and others to share innovative methods and strategies; 2) to engage community representatives and patient advocates in the development of new approaches in community engaged research by meaningfully involving them in the planning, as speakers and presenters, and as conference participants; and 3) to catalyze innovative community engaged research using interactive meeting methods that promote learning, support collective problem solving, and encourage new conceptual frameworks. These conferences have advanced community engagement across the translational research spectrum in biomedical research. For the 2017 meeting, described here, the overarching theme was Innovative and Effective Methods of Stakeholder Engagement in Translational Research. METHODS: The forum was attended by over 210 participants. This conference used novel approaches to fulfill its objectives of participant diversity, meaningful stakeholder engagement, and eliciting varied distinct perspectives to advance the science of community engaged research. Innovative strategies for the conference included: Think Tanks focused on emerging community engaged research topics or topics in need of urgent attention. These dynamic group sessions provided for freely sharing ideas with the purpose of creating change and facilitating new research collaborations. Learning Labs offered unique opportunities to gain practical knowledge regarding innovative methods in community engaged research. Learning Labs also facilitated the wide broadcast of locally successful engagement methods with the goal of speeding the uptake and implementation of community engaged methods. Travel Scholarships were provided for twenty community and patient representatives to participate in the conference. The lack of travel funds was a significant barrier to stakeholder participation in prior community engaged research meetings. The scholarships expanded the role of community and patient representatives in setting research priorities and promoting methods development. Meaningful Engagement meant that community members and patients participated in decision making on all aspects of the conference planning, including the selection of themes, topics, and speakers, and were fully integrated into the conference as speakers, panelists, and moderators. CONCLUSIONS: Community and stakeholder engagement can directly impact research by enhancing clinical trial design, increasing relevance, and increasing recruitment, accrual and retention (Staley K.: Exploring Impact: Public 53 Involvement in NHS, Public Health and Social Care Research - INVOLVE.; 2009, Johnson et al Clin Transl Sci 8:388-54 390, 2015, Joosten et al Acad Med 90:1646-1650, 2015). The 2017 Advancing the Science of Community Engaged Research meeting, Innovative and Effective Methods of Stakeholder Engagement in Translational Research facilitated meaningful engagement of diverse stakeholder groups including racial and ethnic minorities, community and patient representatives, and junior investigators. Of 210 attendees, 72 completed the evaluation, and, of those, 36% self-affiliated as community members, and 21% as patient/caregiver advocacy, faith-based, or tribal organization members. This conference 1) represented a step toward expanding the scientific basis for the community engaged research (CEnR) field; 2) catalyzed innovative community engaged research; and 3) enhanced the reach and impact of the scientific developments emerging from pioneering work in community engagement.

Community Experiences and Perceptions of Clinical and Translational Research and Researchers.

BACKGROUND: Engaging communities in research is increasingly recognized as critical to translation of research into improved health outcomes. Our objective was to understand community stakeholders' perspectives on researchers, academic institutions, and how community is valued in research. METHODS: A 45-item survey assessing experiences and perceptions of research (trust, community value, equity, researcher preparedness, and indicators of successful engagement) was distributed to 226 community members involved in health research with academic institutions. RESULTS: Of the 109 respondents, 60% were racial/ethnic minorities and 78% were women, representing a range of community organizations, faith-based organizations, and public health agencies. Most (57%) reported current involvement with a Clinical and Translational Science Award (CTSA). Only 25% viewed researchers as well-prepared to engage communities and few (13%) reported that resources were available and adequate to support community involvement. Most community stakeholders (66%) were compensated for their involvement in research, but only 40% perceived compensation to be appropriate. Trust of research and perceptions that researchers value community were more positive among those who perceived their compensation as appropriate (P = .001). CONCLUSIONS: Appropriate compensation and resources to support community involvement in research may improve perceptions of trust and value in academic-community partnerships. Strategies are needed to increase researcher preparedness to engage with communities.

Reducing Cardiovascular Disparities Through Community-Engaged Implementation Research: A National Heart, Lung, and Blood Institute Workshop Report.

Cardiovascular disparities remain pervasive in the United States. Unequal disease burden is evident among population groups based on sex, race, ethnicity, socioeconomic status, educational attainment, nativity, or geography. Despite the significant declines in cardiovascular disease mortality rates in all demographic groups during the last 50 years, large disparities remain by sex, race, ethnicity, and geography. Recent data from modeling studies, linked micromap plots, and small-area analyses also demonstrate prominent variation in cardiovascular disease mortality rates across states and counties, with an especially high disease burden in the southeastern United States and Appalachia. Despite these continued disparities, few large-scale intervention studies have been conducted in these high-burden populations to examine the feasibility of reducing or eliminating cardiovascular disparities. To address this challenge, on June 22 and 23, 2017, the National Heart, Lung, and Blood Institute convened experts from a broad range of biomedical, behavioral, environmental, implementation, and social science backgrounds to summarize the current state of knowledge of cardiovascular disease disparities and propose intervention strategies aligned with the National Heart, Lung, and Blood Institute mission. This report presents the themes, challenges, opportunities, available resources, and recommended actions discussed at the workshop.

Cigarette smoking among college students attending a historically Black college and university.

Very little is known about the prevalence, patterns, social norms, and trends of smoking among students attending historically Black colleges and universities (HBCUs). The current study assessed the prevalence, patterns, and norms associated with cigarette smoking among a cross-sectional random sample of 371 undergraduate college students at a historically Black university in North Carolina. Eighty-seven percent of the respondents were non-smokers. Eighty-six percent of the students reported that smoking was discouraged among their peers and 45% responded that they preferred associating with peers who did not smoke cigarettes. Seventy-one percent of the students responded that they did not smoke before the age of 18 and 55% reported that, while they were growing up, neither of their parents smoked. Preliminary findings of this study indicate that smoking is not widely practiced and has not become a socially acceptable or encouraged norm among college students attending an HBCU.