Community Engagement Core Research Articles

Themes Across New Directions in Community Engagement.

The articles in this special issue on New Directions in Environmental Communication in the International Journal of Environmental Research and Public Health present new research and perspectives on engaging communities impacted by Superfund sites—the hazardous waste sites that have been identified by the U.S. Environmental Protection Agency (EPA) as needing cleanup. In particular, these articles focus on the community engagement cores (CECs) that work with affected communities as part the Superfund Research Program at the National Institute of Environmental Health Sciences (NIEHS). The purpose of this closing article is to highlight important themes evident across the eight articles in the special issue. When considered together, the findings reveal important lessons learned about community engagement and environmental communication, but also reveal that much more remains to be known. Recommendations are made for how these teams can continue to practice, reflect on, and research community engagement in ways that build toward a better understanding and implementation of best practices.

Working with Institutional Stakeholders: Propositions for Alternative Approaches to Community Engagement.

Community engagement is a vital aspect of addressing environmental contamination and remediation. In the United States, the Superfund Research Program (SRP) forms groups of academic researchers from the social and physical sciences into Community Engagement Cores (CECs) and Research Translation Cores (RTCs), which focus on various aspects of informing and working with communities during and through the resolution of environmental crises. While this work typically involves engaging directly with members of affected communities, no two situations are the same. In some cases, alternative approaches to community engagement can be more appropriate for community improvement than traditional approaches. In particular, when research teams become involved in contamination crises at a late point in the process, their contributions can be better directed at supporting and reinforcing the work of institutional stakeholders charged with remediating pollution. Relevant factors include issue fatigue among a local population, and contamination that is due to a major employer. Supported by literature and experience, we offer several propositions that we believe lay out conditions that warrant such an approach by academic teams, rather than their direct engagement with unaffiliated individuals in communities.

Inclusiveness and ethical considerations for observational, translational, and clinical cancer health disparity research.

Although general trends in cancer outcomes are improving, racial/ethnic disparities in patient outcomes continue to widen, suggesting disparity-related shortcomings in cancer research designs. Using convenience sampling, a total of 24 data sources, representing several research designs and 5 high-burden tumor types, were included for analyses. The percentages of races/ethnicities across each design/tumor type were compared with those of the 2017 US Census data. The authors used a framework based on the Belmont principles to evaluate the ethical strengths and/or weaknesses of each design. In all designs, white individuals were found to be overrepresented. African American and Asian individuals were underrepresented, and Native Americans had consistently poor or no representation. In general, ethical concerns varied according to the study design. Clinical trials were high with regard to respect for persons and beneficence but low for equitable subject selection related to the inclusion of race/ethnicity. Observational study designs were more inclusive for race/ethnicity compared with clinical and translational studies, but their clinical usefulness was less. The authors proposed that ethical concerns should vary according to the study design. Because observational designs have strengths in inclusiveness for race/ethnicity, their clinical usefulness can be improved by extending the Learning Health System in hospital catchment populations, the use of health records linked to biospecimens, and minority oversampling. Likewise, minority enrollment into clinical trials can be improved through Learning Health System linking and by using National Cancer Institute-mandated Community Outreach and Engagement Cores. This will allow precision medicine for otherwise overlooked minority subgroups.

Assessing the national capacity for disaster research response (DR2) within the NIEHS Environmental Health Sciences Core Centers

IntroductionDisaster research response (DR2) is necessary to answer scientific questions about the environmental health impacts of disasters and the effectiveness of response and recovery strategies. This research explores the preparedness and capacity of National Institute of Environmental Health Sciences (NIEHS) P30 Core Centers (CCs) to conduct DR2 and engage with communities in the context of disasters.MethodsIn early 2018, we conducted an online survey of CC Directors (n = 16, 69.5% response rate) to identify their DR2 relevant scientific assets, capabilities, and activities. Summary statistics were calculated. We also conducted in-depth, semi-structured interviews with 16 (69.5%) CC Community Engagement Core directors to identify facilitators and barriers of DR2 community engagement. Interview notes were coded and thematically analyzed.ResultsSurvey: While 56% of responding CCs reported prior participation in DR2 and preparedness to repurpose funding to support DR2, less than one third reported development of a disaster-specific data collection protocol, deployment plan, or concept of operations plan, participation in an exercise to test DR2 capacity, development of academic partnerships to conduct DR2, development of a process for fast-tracking institutional review board approvals for DR2, or maintenance of formal agreements with state, local, or community-based partner(s). A number of CCs reported developing or considering developing capacity in these areas. Barriers to, and tools and resources to enhance, CC engagement in DR2 were identified. Interviews: Four key components for community engaged DR2 were identified: pre-existing community relationships, responsive research that benefits communities, coordination among researchers, and coordination with community response partners. Several roles for, benefits of, and barriers to Community Engagement Rapid Response Teams (CERRT) were described.ConclusionsCCs have significant scientific assets and community partnerships that can be leveraged for DR2; however, additional planning is necessary to ensure that these scientific assets and community partnerships are leveraged when disasters strike.

Telehealth and texting intervention to improve HIV care engagement, mental health and substance use outcomes in youth living with HIV: a pilot feasibility and acceptability study protocol

IntroductionYouth and young adults living with HIV (YLWH) experience worse clinical outcomes than adults and high rates of behavioural health challenges that impact their engagement in care and adherence to...

WYZ: a pilot study protocol for designing and developing a mobile health application for engagement in HIV care and medication adherence in youth and young adults living with HIV

IntroductionYouth and young adults bear a disproportionate share of the HIV burden and there is a critical need for interventions to curb health disparities experienced among these age groups. The...

Skin Bleaching Among African and Afro-Caribbean Women in New York City: Primary Findings from a P30 Pilot Study.

IntroductionThe application of skin bleaching products to inhibit melanogenesis is a common practice within the African diaspora. Despite the adverse health effects of skin bleaching, rigorous studies investigating skin bleaching behavior among these populations in the United States are limited. In our P30 pilot study, we explored predictors of skin bleaching practice intensity among African and Afro-Caribbean women.MethodsIn collaboration with our Community Engagement Core, we conducted a cross-sectional study to investigate the relationship between demographic and psychosocial predictors and skin-bleaching-related practice patterns among African and Afro-Caribbean women in New York City.ResultsAmong the 76 participants recruited, the median age at the initiation of skin bleaching was 19.5 (16–25) years, yielding a median duration of 13.5 (6–23) years. Although pregnant women were not actively recruited for the study, 13.2% (n = 10) of the participants used skin bleaching products while pregnant or possibly breastfeeding. Nativeness and education were associated with various components of skin bleaching practice intensity, including duration of skin bleaching, daily use of products, and bleaching of the entire body. Participants’ perceived skin-color-related quality of life was not associated with skin bleaching practice intensity.ConclusionSkin bleaching is a habitual practice that likely requires culturally sensitive interventions to promote behavioral change. The existence of prenatal and postnatal exposure to mercury, hydroquinone, and other potentially harmful chemicals in skin bleaching products highlights an urgent need to explore the adverse effects of skin bleaching practices on birth outcomes and the growth and neurodevelopment of young babies.

3392 Tapping into Community Insight and Lived Experience to Inform, Guide and Direct Translational Science Initiatives

OBJECTIVES/SPECIFIC AIMS: This study aims to describe adaptability in methods used to apply community input to programming within the field of translational science. The outcomes of community informed programming include opportunities for innovative projects and approaches, and better responsiveness to community needs. It is anticipated that this will result in greater community involvement in research, moving towards greater health equity. METHODS/STUDY POPULATION: The SC CTSI is situated in urban Los Angeles, one of the most diverse communities in the world. Eight SC CTSI Community Engagement Core initiatives that employ community partnership are illustrated. The activities include social marketing campaigns for cervical cancer prevention; use of community-embedded research ambassadors to increase scientific literacy in Latino and Black/African-American communities; use of innovative technologies to educate pediatric patients and families about clinical research; working with the entertainment industry to promote clinical research in popular television shows; a community advisory board that is tailored and embedded in each CSTA core group; a community based research dissemination program; an ad-hoc community advisory group assembled to adapt a research 101 curriculum for Black/African-American communities; and a series of listening sessions conducted throughout Los Angeles. RESULTS/ANTICIPATED RESULTS: Integration of community voices provide direction for future planning, programming and execution of all referenced initiatives. Ultimately, the goal for these discussions with community members is to develop innovative approaches to CTSA programming. DISCUSSION/SIGNIFICANCE OF IMPACT: Racial and ethnic minorities continue to experience underrepresentation in clinical research trials. CTSAs have been tasked with addressing barriers that have historically led to disparities in research participation, and by extension, the effectiveness of medical interventions in diverse populations. Community input is an invaluable source for knowledge and innovative ideas in how to increase involvement in various aspects of the research process, including dissemination, recruitment and enrollment in clinical trials. CTSAs have increasingly augmented Community Engagement programs within their respective cores to address population disparities. The approaches used to engage communities require an element of fluidity and flexibility, and a reliance on the input of community members, in order to maintain relevant and desired community engagement practices.

3545 “Sofia Learns about Research”: an interactive storybook to educate children and their families on clinical research with a welcoming and inclusive approach.

3545 “Sofia Learns about Research”: an interactive storybook to educate children and their families on clinical research with a welcoming and inclusive approach.

Community-Academic Partnerships to Reduce Cancer Inequities: The ChicagoCHEC Community Engagement Core.

In 2015, Chicago Cancer Health Equity Collaborative (ChicagoCHEC) was formed to address cancer inequities. The Community Engagement Core (CEC) is one of the key components aimed at establishing meaningful partnerships between the academic institutions and the community. Herein, we describe ChicagoCHEC CEC processes, challenges, opportunities, successes, and preliminary evaluation results. CEC stresses participatory and empowerment approaches in all aspects of ChicagoCHEC work. Evaluation processes were conducted to assess, report back, and respond to community needs and to evaluate the strength of the partnership. CEC has facilitated meaningful community integration and involvement in all ChicagoCHEC work. The partnership resulted in annual cancer symposium; more than 50 outreach and education activities, including cancer screening and referrals; the development of health resources; and providing expertise in culturally and health literacy appropriate research targeting minorities. Preliminary partnership evaluation results show that ChicagoCHEC researchers and community partners have developed trust and cohesiveness and value the community benefits resulting from the partnership. CEC is essential in achieving research objectives following community participatory action research (CPAR) approaches. Some key lessons learned include 1) the need for clear, honest, and open channels of communication not only among the three participating academic institutions, but also among the community partners, 2) transparent operational processes, and 3) mutual trust and understanding regarding the different cultures, structure, foci and processes, expectations at each institution and partnering organization.

Community health perceptions and human environmental exposure to chromium contamination in a small New Jersey City.

Following a 1983 chromic acid (hexavalent chromium [CrVI]) spill from a Garfield, NJ electroplating plant, CrVI-contaminated water was found in a local firehouse basement in 1993. An ATSDR public health advisory was issued for the plant site in 2010, and from 2008-2015, fourteen residential properties have required remediation to address CrVI-contaminated dust in the basements. As part of the Community Outreach and Engagement Core of the NYU NIEHS Center, seventytwo Garfield residents aged 18-65 years, participated in a community survey with the goal of identifying concerns related to environmental and community health. Thirty-two percent responded that they 'didn't know' if they were exposed to chemicals or pollutants where they live. This finding suggests a limited awareness of environmental chemical exposures, chromium contamination and/or potential exposure to CrVI. Furthermore, toenail clippings were collected from forty-seven Garfield residents and analyzed for total chromium levels to assess potential long-term exposure. On average, residents living on/inside the contaminated plume area had higher total chromium levels in their toenail clippings than residents living outside the plume area. However, chromium levels for all participants were within the range of historical normal. This study highlights the value of partnerships between environmentally-impacted community's and academic scientists working together to identify potential contaminant exposures and address public health concerns through research and environmental health education.

Nutrition and Environmental Pollution Extension Curriculum Improved Diet-Related Behaviors and Environmental Health Literacy.

Kentucky experiences some of the nation’s worst health outcomes related to obesity, diabetes, high blood pressure, and other age-related chronic diseases linked with oxidative stress and inflammation, which in turn are associated with poor diet, lack of physical activity, and exposure to certain environmental pollutants. In the Commonwealth, deteriorating infrastructure, inappropriate waste disposal, and potential occupational injury related to mining, agriculture, and other regionally important industries exacerbate the need for residents to have basic knowledge of potential environmental health threats. Unfortunately, community-level understanding of the complex connections between environmental exposures and health is limited, with many Kentuckians unaware that the Commonwealth is home to 13 hazardous waste sites included in the United States Environmental Protection Agency Superfund National Priorities List (NPL). The NPL highlights priority sites for long-term remedial action to reduce environmental contaminants. To enhance the understanding of environmental health and protective actions, the University of Kentucky Superfund Research Center Community Engagement Core developed a 9-lesson extension curriculum “Body Balance: Protect Your Body from Pollution with a Healthy Lifestyle” (Body Balance) and partnered with Kentucky’s Family and Consumer Sciences (FCS) Cooperative Extension Service to pilot the curriculum in Kentucky communities. FCS agents in 4 Kentucky counties delivered the Body Balance pilot study (18-31 participants per lesson). Pre- and post-lesson questionnaires revealed increased knowledge and awareness of the effects of environmental pollution on health and the protective role of dietary strategies. Focus group participants (n = 18) self-reported positive behavior changes because of increases in knowledge and leadership from their FCS agent. The Body Balance curriculum appeared to be a promising mechanism for raising environmental health and diet knowledge, as well as for promoting positive behavior changes among white, middle/older-aged women in rural Kentucky communities.

Leveraging Community Partnerships to Advance Disaster Research Response: A Qualitative Analysis

In response to concerns about increasing disasters, the NIH created the Disaster Research Response Program (DR2) as “the national framework for research on the medical and public health aspects of disasters and public health emergencies.” We sought to identify perceived facilitators and barriers to community engagement (CE) in DR2 and examine how existing community partnerships can be leveraged to facilitate timely and effective DR2. We conducted key informant interviews with 15 National Institute of Environmental Health Science Environmental Health Science Centers Community Engagement Core (CEC) Directors. Interviews elicited information about current community partnerships and familiarity and experience with DR2. We also explored the possibility of developing a CE response team that could be rapidly deployed to disaster-affected communities to facilitate translational research and CE activities.Interview notes were inductively coded and qualitatively analyzed. Common barriers to CE in DR2 included lack of DR2 experience, complexity of coordinating multiple external research groups, issues related to rapid IRB approval or IRB coordination across institutions, perceived detrimental impacts to well-developed community relationships, and varying expectations and priorities among community groups and researchers. The importance of established working relationships with communities before a disaster occurs was a recurrent theme and emphasizes the important role that CECs and practice-based connections play in DR2. A DR2 CE response team was identified as an opportunity worthy of further exploration.The results of this study will help inform the NIH DR2 program and provide information on how to best quickly and effectively engage community partners when conducting DR2.

A Multigenerational Strategy to Transform Health Education into Community Action.

The National Institute for Minority Health and Health Disparities funded Centers of Excellence to address health disparities through research, education and professional training, and community engagement. This article summarizes a decade of multigenerational educational programing embedded in the Community Engagement Core (CEC) of the National Institute for Minority Health and Health Disparities-funded Center for Healthy Communities-Center of Excellence at the University of South Alabama. Our objective is to demonstrate how community-based participatory research (CBPR) initiated the multigenerational approach, uniting the community health education and the educational pipeline programs, and transformed a traditional professional symposium into a mechanism to increase community participation and action. Community engagement and education adhered to CBPR principles and methods. A 3-year planning process before full funding of the Center of Excellence allowed the CHC to develop community partnerships and implement pilot projects that would assure community access and participation in COE programs. Program innovation was rooted in community suggestions and community priorities. The annual Regional Health Disparities Symposium (RHDS) was literally transformed through community engagement. Education programs for adults and youth achieved their goals independently, the STARS AND STRIPES (Student Training for Academic Reinforcement in the Sciences and Special Training to Raise Interest and Prepare for Entry into the Sciences) pipeline program has a success rate of 88% for participants' admission to colleges and universities. CHA-led events have documented an outreach to more than 6,500 community members and the COE has funded eight CHA-led projects directly addressing community action plans developed through CBPR methods during the history of the RHDS. But the real story has emerged from transformative multigenerational interaction via CBPR.

The Community Mentorship Program: Providing Community-Engagement Opportunities for Early-Stage Clinical and Translational Scientists to Facilitate Research Translation.

A goal of the Southern California Clinical and Translational Science Institute (SC-CTSI) at the University of Southern California and Children's Hospital Los Angeles is to train early-stage clinical and translational scientists (CTSs) to conduct research that improves the health of diverse communities. This goal aligns well with the Institute of Medicine's recommendations emphasizing community engagement in biomedical research that facilitates research translation. The Community Mentorship Program (CMP), created to complement community-engaged research didactics, matches CTSs with community mentors who help them identify and complete community-engaged experiences that inform their research. The CMP was piloted in 2013-2015 by the SC-CTSI Workforce Development and Community Engagement cores. The CMP team matched three CTSs (assistant professors pursuing mentored career development awards) with mentors at community-based organizations (CBOs) aligned with their research interests. Each mentor-mentee pair signed a memorandum of understanding. The CMP team checked in regularly, monitoring progress and addressing challenges in CTSs' completion of their community-engaged experience. Each pair completed at least one community-engaged activity informing the CTS's research. In exit interviews, the CTSs and CBO mentors expressed satisfaction with the program and stated that they would continue to work together. The CTSs reported that the program provided opportunities to develop networks outside academia, build trust within the community, and receive feedback and learn from individuals in communities affected by their research. The CMP will be expanded to include all eligible early-career CTSs and promoted for use in similar settings outside the SC-CTSI.

Stroke Investigative Research and Education Network: Public Outreach and Engagement.

Stroke is becoming a leading cause of disability and death, and a major public health concern in Sub-Saharan Africa (SSA). The Stroke Investigative Research and Education Network (SIREN) seeks to comprehensively characterize the genomic, sociocultural, economic, and behavioral risk factors for stroke and to build effective teams for research to address and decrease the burden of stroke and other non-communicable diseases in SSA. One of the first steps to address this goal was to effectively engage the communities that suffer high burdens of disease in SSA. This paper describes the process of SIREN project's community engagement activities in Ghana and Nigeria. The aims of community engagement (CE) within SIREN are to: i) elucidate information about knowledge, attitudes, beliefs, and practices (KABP) about stroke and its risk factors from individuals of African ancestry in SSA; ii) educate the community about stroke and ways to decrease disabilities and deaths from stroke; and iii) recruit 3000 control research subjects to participate in a case-control stroke study. CE focused on three-pronged activities-constitution and interaction with Community Advisory Board (CABs), Focus Group Discussions (n=27) and community education and outreach programs (n=88). FGDs and outreach programs indicate that knowledge of stroke, as well as risk factors and follow-up evidence-based care is limited and often late. Almost all indicated that genetic testing could help health provider’s better treat stroke and help scientists better understand the causes of stroke. Over 7000 individuals have received education on cardiovascular risk factors and about 5,000 have been screened for cardiovascular risk factors during the outreaches. The CE core within SIREN is a first of its kind public outreach engagement initiative to evaluate and address perceptions about stroke and genomics by patients, caregivers, and local leaders in SSA and has implications as a model for assessment in other high stroke risk populations.

Collaborating for Systems Change: A Social Science Framework for Academic Roles in Community Partnerships.

Environmental health researchers, government agencies, and community groups have endorsed long-term community-academic partnerships as an effective strategy to support science-based improvements in environmental health. Social sciences concepts, approaches, and methods are fundamental to these translational partnerships. However, appropriate roles for academic partners vary throughout the process of changing systems (policies, practices, programs, etc.). This can complicate planning, evaluating, and sustaining such partnerships. We set forth a conceptual framework for academic partners' roles at different stages of systems change. We apply this framework to three longstanding academic-community partnerships involving National Institute of Environmental Health Sciences Community Outreach and Engagement Cores. We conclude by discussing how the framework can help academic partners tap appropriate expertise, redefine their roles, and evaluate their contributions to community efforts to improve environmental health.

PCBs in schools--where communities and science come together.

A novel aspect of the 8th International PCB Workshop at Woods Hole, MA, was the interaction between scientists and activists. While earlier workshops in this series had mentioned policy making, this Workshop focused on the problem of PCBs in schools. Focus on a problem brought an activist to give a plenary talk and facilitated a 1-day registration for other non-scientists to attend. The workshop was cohosted by the Superfund Research Programs at University of Iowa and Boston University and included active participation of each Program's Research Translation and Community Engagement Cores. A mandate of each National Institute of Environmental Health Science (NIEHS)-funded Superfund Research Program is bidirectional communication between scientists and community groups. The authors describe the events leading up to community involvement in the Workshop and the substance of the community engagement aspects of the workshop, in particular the participation by a parent-teacher group, Malibu Unites. The authors also discuss the value of such communication in terms of making important research accessible to those who are most affected by the results and poised to use it and the value of making scientists aware of the important role they play in society in addressing difficult questions that originate in community settings.

Understanding the supports of and challenges to community engagement in the CTSAs.

The Clinical and Translational Science Award (CTSA) program has raised the profile and the available funding for engagement in biomedical research. Such increased funding and attention may address known barriers to engagement. However, little work has been done to describe experiences across multiple CTSAs, especially how the CTSA structure supports or challenges engagement. We sought to understand the supports and challenges experienced by multiple CTSAs as they pursued community engagement. This knowledge may help guide future efforts to support and enhance community engagement in biomedical research. We conducted semi-structured, in-depth interviews with CTSA community engagement core leaders and staff from the 2006 cohort of CTSAs (n = 12). A total of 17 interviews with respondents from nine institutions identified three support themes, including: funding, existing relationships with communities, and leadership and a partnership approach at the institution. Six challenge themes arose: need for capacity development, lack of positive relationships with communities, lack of leadership, funding constraints, time and staff constraints, and unsustainable models. The CTSAs have brought much-needed attention to community engagement in research, but more can be done to adequately support engagement. Challenges remain that need to be addressed to achieve the potential benefits of engagement.

Bridging research and environmental regulatory processes: the role of knowledge brokers.

Federal funding agencies increasingly require research investigators to ensure that federally sponsored research demonstrates broader societal impact. Specifically, the National Institutes of Environmental Health Sciences (NIEHS) Superfund Research Program (SRP) requires research centers to include research translation and community engagement cores to achieve broader impacts, with special emphasis on improving environmental health policies through better scientific understanding. This paper draws on theoretical insights from the social sciences to show how incorporating knowledge brokers in research centers can facilitate translation of scientific expertise to influence regulatory processes and thus promote public health. Knowledge brokers connect academic researchers with decision-makers, to facilitate the translation of research findings into policies and programs. In this article, we describe the stages of the regulatory process and highlight the role of the knowledge broker and scientific expert at each stage. We illustrate the cooperation of knowledge brokers, scientific experts and policymakers using a case from the Brown University (Brown) SRP. We show how the Brown SRP incorporated knowledge brokers to engage scientific experts with regulatory officials around the emerging public health problem of vapor intrusion (VI). In the Brown SRP, the knowledge broker brought regulatory officials into the research process, to help scientific experts understand the critical nature of this emerging public health threat, and helped scientific experts develop a research agenda that would inform the development of timely measures to protect public health. Our experience shows that knowledge brokers can enhance the impact of environmental research on public health by connecting policy decision-makers with scientific experts at critical points throughout the regulatory process.