Experience of a National Cancer Institute-Designated Community Outreach and Engagement Program in Supporting Communities During the COVID-19 Pandemic

Abstract

Coronavirus disease of 2019 (COVD-19) continues to disrupt cancer care delivery efforts and exacerbate existing health inequities. Here we describe the impact of COVID-19 on community outreach organizations partnering with a National Cancer Institute—designated Community Outreach and Engagement (COE) office in New York City (NYC) and lessons learned from these experiences. Between July and September of 2020, we conducted 16 semi-structured interviews with community key-informants to validate and inform efforts to support community organizations in response to COVID-19. Key-informants represented organizations performing a broad range of health and cancer care activities serving historically underserved, low-income, marginalized communities of color in NYC. All interviews were recorded, transcribed, and analyzed using rapid qualitative approaches. We summarize our response to challenges raised by partnering organizations. Themes included the impact of COVID-19 on communities served, challenges faced by organizations, and solutions to address COVID-19 related challenges. The COE and community organizations had to shift priorities and adapt engagement efforts to address the more urgent needs of the community (e.g., emotional distress, food insecurity). COVID-19 disrupted traditional community engagement activities for cancer outreach—calling for creativity and innovation in the community engagement process and shift in priorities. The COE responded by maintaining ongoing dialogue with community partners, by being flexible in scope/priorities beyond cancer prevention and control, and by providing education, outreach, fundraising and other resources, and developing new partnerships to meet needs of community organizations and the populations they serve.

Introduction

Coronavirus Disease 2019 (COVID-19) altered cancer care delivery overnight, prompting cancer centers in the U.S. to transform their practice infrastructure to deliver care in a safe and efficient manner [1–3]. Physical distancing measures were put into place, screenings and elective surgeries were put on hold, and care shifted to nontraditional settings (e.g., telemedicine and home) [4, 5]. While these changes helped to ensure the safety of patients and clinical teams, they failed to account for the inequities experienced by historically marginalized communities that are distrustful of the medical establishment resulting from longstanding experiences with discrimination and racism (i.e., Tuskegee, Henrietta Lacks), are less willing to adopt recommended safety measures, and more wary about the health information [3, 6, 7].

The widespread impact of COVID-19 continues to disproportionately affect communities experiencing social, structural, and healthcare inequities [8, 9], such as the low-income, multi-lingual and historically underserved communities of color in New York City (NYC). NYC became the early epicenter of the COVID-19 pandemic in the U.S with an estimated 214,000 cases and 18,000 deaths by July 2020 with age-adjusted death rates for Hispanic and Black communities twice as high compared to White communities [10]. These disparities may be attributed to a range of inequities, including higher burden of chronic conditions, inflexible or ‘essential’ work in service jobs, crowded living conditions, lower health literacy, structural racism, and limited access to health care [11–14]. These same communities also face increased cancer disparities across the cancer care continuum including later diagnosis for many common cancers like colorectal, breast, and prostate cancer, and higher mortality after diagnosis [15].

A greater emphasis has been placed on community-engaged approaches to reduce cancer disparities [16], especially within the context of persistent racial, ethnic and socioeconomic inequities amidst the COVID-19 crisis [17–20]. Engaging community partners has shown to improve communication and trust, produce innovation, and reduce health disparities [21, 22]. In 2016, the National Cancer Institute (NCI) mandated that all NCI-designated cancer centers have an office dedicated to community outreach and engagement (COE), and partner with community organizations to gain knowledge and insight into perspectives of the community including stigma and structural barriers, and devise a collective response [17, 23, 24]. This article describes the experience of community organizations responding to COVID-19 and how an NCI-COE used this information to inform and validate efforts to mitigate COVID-19 and cancer care inequities.

Methods

Setting

The Herbert Irving Comprehensive Cancer Center (HICCC) of the Columbia University Irving Medical Center is an NCI-designated comprehensive cancer center located in Northern Manhattan in NYC. The COE office within the HICCC strives to reduce cancer burden and cancer health inequities through extensive outreach, research, and engagement of community stakeholders in developing and delivering relevant community education, access to services, research, and policy initiatives. The HICCC neighborhood catchment area (NCA) includes Central Harlem, Washington Heights, and Inwood in Northern Manhattan and the South Bronx, where 75% of residents identify as non-White, 32.2% are foreign-born, and 22.3% live below the federal poverty line.

Design

Between July and September of 2020, the HICCC COE conducted a pragmatic rapid qualitative study to characterize experiences and challenges that community organizations in the NCA faced in delivering outreach efforts during COVID-19. Rapid qualitative research is an appropriate approach that can provide timely and actionable responses to new and emerging needs of the community during difficult and evolving circumstances of an epidemic, and provides insight into people’s lived experiences of disease, care, and response efforts [25, 26]. This study was approved by the Columbia University Medical Center institutional review board.

Data Collection, Recruitment and Analysis

Leveraging the HICCC COE’s active network of community partners and the community advisory board (CAB), we recruited community key-informants representing different organizations and roles within the organization to participate in semi-structured interviews. The semi-structured interview guide focused on the challenges key-informants and their communities faced in delivering outreach during COVID-19. Key-informants were also asked how the COE could help support their community and organizational needs during and beyond COVID-19. All interviews were audio-recorded, conducted by phone or zoom, and lasted between 30 and 90 min. The interviewers also took notes of the main topics that were summarized and presented at weekly leadership meetings to facilitate the development of strategies for supporting community organizations during COVID-19. Finally, two researchers (JA and EL) performed rapid qualitative analysis on the transcripts to validate current efforts, provide depth and context to the challenges experienced by community partners, and to identify potential gaps or future strategies. To facilitate this process, transcripts were divided evenly between the two researchers (JA and EL). Each researcher reviewed their respective transcripts twice and generated a summary of the main themes based on a deductive code structure informed by the interview guide, before coming together to discuss their findings and finalize themes [27]. These themes were presented to the COE leadership team for alignment and priorities of activities.

Results

We completed 16 semi-structured interviews with community key-informants. As shown in Table 1, most of the key-informants represented community organizations or initiatives spanning a variety of health and social topics, in addition to cancer, and varied in size of organizational reach. We identified three overarching themes: (1) The widespread impact of COVID-19 on members of the community, (2) Challenges community organizations experienced in addressing the emerging needs brought on by COVID-19, and (3) Innovative responses and strategies to community outreach and engagement to overcome COVID-19 related challenges. Table 2 provides a summary of each theme with an exemplar quote. We provide a narrative summary of findings by each theme followed by results specifically in response to the question, “How the COE can support community organizations?” For the latter, we also report and integrate practical examples of how the COE took actions to address the feedback from the community.

Table 1.

Characteristics of community organizations represented by key informants

Organization	Organization focus	Community reacha
Harlem Health Initiative at SUNY School of Public Health	Education, research, and service in public health and advocating policy and practice to advance social justice and improve health outcomes	10,000+
Michelle Obama Community Democratic Club	Political; civil rights; advocacy	10,000+
Cervivor	Cancer Survivorship Advocacy/Awareness	10,000+
Bethel AME Church + National Black Leader Coalition on Health	Non-profit organization that champions the promotion of health and prevention of disease to reduce disparities and achieve equity within the black community	10,000+
First Corinthian Baptist Church + National Black Leader Coalition on Health	Non-profit organization that champions the promotion of health and prevention of disease to reduce disparities and achieve equity within the black community	10,000+
Abyssinian Baptist Church + National Black Leadership Coalition on Health	Church + education, + Non-profit organization that champions the promotion of health and prevention of disease to reduce disparities and achieve equity within the black community	10,000+
Hispanic Federationb	National Organization with multiple programs that seeks to empower and advance the Hispanic community, support Hispanic families, and strengthen Latino institutions through work in the areas of education, health, immigration, civic engagement, economic empowerment, and the environment	10,000+
Harlem Congregations for Community Improvement	Coalition of inter-faith congregations that has implemented a comprehensive portfolio of programs to provide affordable housing and safe streets; youth programs, and economic development	5000+
Union Settlement	Multi-service organization in NYC that provides education, health, senior services, youth development, childcare, counseling, and economic development programs	10,000+
Office of Faith Based Initiatives, Department of Health Mental Hygieneb	NYC Government Agency that provides education, community advocacy and acts as an interfaith resource	10,000+
Miss Black American Princess, Inc	501C3 providing mentorship to young adolescent and teen girls in urban areas (social services, social change, gender equality, and overall mentorship)	500–1000
Herbert Irving Comprehensive Cancer Center	Cancer Center	10,000+
SHARE	Advocacy organization facilitating outreach and support groups for breast and ovarian cancer survivors-mostly for women of African heritage	10,000+
HDR Healthcare network	Network of ambulatory clinics in Northern Manhattan and the Bronx. They also support community physicians, care coordination, and transition of care	5000+

^aSize of the population served in NYC

^bInterviewed two key-informants from organizations

Table 2.

Description of themes with exemplar quote

Themes	Exemplar Quote
The widespread impact of COVID-19 on members of the community	“The essentials—those are not readily available. And, job loss created financial insecurity which then affects your housing, which affects your ability to feed your family, creates stress, and then the compounding overall mental stress of all of this, right—all of the factors and that the toll that this takes on an individual, on a faith leader, on a faith-based organization, on our community. These are the some of the hardest impacts.”
Challenges community organizations experienced in addressing the emerging needs brought on by COVID-19	“That mission—it’s all now being done through the lens of COVID-19 response. So the ways we operated in the past have all now been adjusted in response to COVID-19.”
Innovative responses and strategies to community outreach and engagement to overcome COVID-19 related challenges	“We needed a little bit of support and guidance and it was good to have those sister organizations that can walk us through it and we can learn from the work that they’ve done and their mistakes to make it better for our community we constantly keep talking to them to let them know how the work has happened with us, how it is going, you know what lessons have we learned.”

The Widespread Impact of COVID-19 on Members of the Community

We asked key-informants to describe the impact of COVID-19 on the communities that their organization serves. Key-informants described how the rising number of COVID-19 hospitalizations, deaths, job loss, and social distancing orders, such as stay-at-home orders and limits on social gatherings, adversely affected members of the community in several ways, including emotional distress (i.e., fear, anxiety, depression), grief and bereavement, food and housing insecurity, and social isolation. With hospitals at and over capacity, many key-informants reported that members of their community were denied medical care. The emerging nature of COVID-19 combined with misinformation also generated confusion and anxiety around the severity of the disease and hesitancy to seek medical care, including cancer care when available and recommended, out of fear of risking exposure. Key-informants also described how shifts to telemedicine and efforts by hospital systems to prioritize/triage care based on “importance” created additional challenges for members of the community, particularly the elderly, low-income, and Spanish-speaking populations. The two key-informants directly involved in the delivery of cancer care reported that new cancer diagnoses slowed, and that patients with cancer were often unable or unsure how to advocate for their own care. In addition, the perceived success of telemedicine was limited as several key-informants described how many members with chronic conditions within their community did not have access to or struggled to use the technology needed to complete telemedicine visits and questioned how a clinician could properly assess their condition virtually. Finally, several key-informants reported concerns that the broad effects of COVID-19 would exacerbate longstanding distrust in the medical system that could hinder efforts, such as vaccine rollout and uptake.

Challenges Community Organizations Experienced in Addressing the Emerging Needs Brought on by COVID-19

We asked how COVID-19 impacted the work of community organizations. Almost all key-informants described how their organization had to shift its priorities, mission, and activities to address the emerging needs of their community and to be compliant with social distancing orders. Prior to COVID-19, many organizations conducted in-person outreach (i.e., support groups, health fairs, navigation) and educational activities focusing on cancer risk reduction and control. A few organizations also focused on non-health or cancer-related activities including immigration, civic engagement, and education. Once COVID-19 emerged, key-informants describe how priorities shifted to providing COVID-19 education, supplying personal protective equipment, linking community members to mental health resources, addressing food insecurity and unemployment.

Many key informants reported a lack of funding to address new and emerging needs that were outside the scope of their organization’s mission. Further, key-informants said that they had to shift their job responsibilities to accommodate limited staffing and increased workload. Many key-informants also reported that their organization did not have the resources or technological support needed to transition from in-person to virtual activities during the early stages of the pandemic. Once in place, several key-informants stated that their organization was able to reach a larger audience but also acknowledged challenges reaching their most vulnerable members including elderly populations. Thus, many organizations retained some form of in-person activities, such as delivering food, face masks, and following up with elderly members.

Innovative Responses and Strategies to Community Outreach and Engagement to Overcome COVID-19 Related Challenges

Almost all key-informants described how the transition from in-person to virtual outreach drove their organizations to develop new and innovative solutions and partnerships to address the needs of the community. For instance, a few organizations conducted outreach by phone to check-in on elderly members of their community without access to resources, while others performed virtual support groups. Importantly, almost all key-informants reported partnering with various organizations and key-figures, such as the Department of Health, elected officials, media outlets, churches, food suppliers, advocacy groups and universities to address the growing needs of their community—particularly around mental health and food insecurity. For instance, many key-informants said that their organization partnered with the Department of Health to provide up-to-date information about COVID-19 and some became a COVID-19 testing center. Some organizations partnered with neighboring restaurants and community-based food suppliers to open food banks or distribute meals within their community. Finally, key-informants described leveraging existing partnerships, including the COE, to disseminate information about COVID-19, distribute masks and hand sanitizer, and assist with food/housing insecurity.

COE Response

We asked community key-informants how the COE could support their organizations during and beyond COVID-19. Findings from this question were categorized into three broad domains—education and outreach, funding, and resources—and used by the COE to adapt and develop strategies. Findings for each domain are summarized below with a description of the COE response.

Education and Outreach

Many key-informants described how the COE could serve as a trusted source and messenger for education and information around seeking care during COVID-19 and should continue to partner with community organizations to ensure that this information has broad reach across all segments of the community. Many key-informants stated that the COE could continue to be responsive to the emerging needs of the community and should incorporate these needs into new programs and projects during and beyond COVID-19. In response, the COE increased the number of virtual cancer prevention educational workshops (40+) and webinars (20+). Almost all webinars incorporated information about COVID-19 and other emerging health topics (i.e., mental health). The interviews reported on above also informed COE’s programming [28], including our Faces of Mental Health series and yoga webinars to help alleviate emotional distress community members were experiencing and an online summer enrichment program for youth in response to the lack of summer internship opportunities during the pandemic. The COE also invited clinicians to speak at virtual educational sessions to allow community members the opportunity to ask medical and cancer screening questions during a time when the community was hesitant to seek care. In addition to educational series, the COE distributed COVID-19 fact sheets in English and Spanish throughout the NCA, organized virtual “listening tours” in English and Spanish to inform the hospital about the community needs and concerns, particularly around the use of telemedicine.

Funding

Almost all key-informants said that the COE could help support their organization by funding activities outside the scope of the community organizations priorities and mission. The HICCC COE responded by helping community organizations with fundraising campaigns for local food pantries and campaigns for women’s shelters to provide baby items. In addition, the COE continued a program that aims to increase training in community-based participatory research (CBPR) methods by partnering community organizations with HICCC investigators to develop proposals for funding-three HICCC investigators paired with COE members and community partners participated in this initiative.

Resources

The majority of community key-informants stated that the HICCC COE could provide resources including technical support and personnel/volunteers to assist with outreach and educational activities and to help reduce staff workload. Prior to the pandemic, the COE provided numerous resources and services to the community including translation services, consultation and training around research methodologies, and data management. The COE continued to provide these resources during the pandemic but also extended their services to address the needs of community organizations. For example, the COE provided technical assistance related to virtual platforms and started a YouTube playlist [29] in order to create and share resources online. In addition, COE members volunteered at vaccine sites and delivered food to families in the catchment area.

Discussion

Community outreach and engagement has shown to play a key role in the successful response to past outbreaks, including HIV/AIDS and Ebola, and is fundamental in rebuilding a stronger healthcare system after the more acute phase of COVID-19 and supporting an equity-focused response by addressing and centering the needs and concerns of those most impacted by the pandemic [17–19, 30]. In this study, we illustrate how the HICCC COE rapidly collected and synthesized interview data among community key-informants gathered during the early peak of COVID-19 to validate and inform efforts to support community organizations in response to COVID-19 in NYC. Overall, COVID-19 prompted the COE and its partnering community organizations to shift priorities and adapt community outreach and engagement efforts away from cancer care and healthcare more broadly to address the more emerging needs of the community (i.e., emotional distress, social isolation, food and housing insecurity). Rather than build new programs, community organizations created new partnerships with community and academic organizations building off their existing strengths and capacity. Our findings also support the role of NCI-designated COEs and community outreach and engagement efforts more broadly in being responsive and flexible to community needs, building trust within the community, and strengthening community organizational capacity to reduce the long-term damage of COVID-19 and achieve equity [19, 20, 31].

Our experience with the early crisis of COVID-19 emphasized the importance of building on opportunities to receive feedback and guidance from community leaders and members on emerging needs, priorities, and questions they have about healthcare. COVID-19 led many of our community organizations and the COE to adapt and modify outreach strategies, organizational priorities, means of communication, and approaches to collaboration, and research more broadly to address COVID-19. By leveraging pre-existing community partnerships, the COE was able to rapidly respond to the needs of historically underserved and marginalized communities. Early on, the COE established a two-way bi-directional dialogue with community organizations and used information from these discussions and interviews with community key-informants to gather information about the problem, develop plans, co-create and communicate information, and rapidly track and adjust plans as COVID-19 progressed. Like other COVID-19 outreach efforts [32–34], the COE used feedback from qualitative interviews to inform programming and to guide COE efforts in developing webinars and resource pages to support community needs around COVID-19, cancer screening, and food insecurity. Additionally, the COE incorporated more opportunities for community members to ask questions to healthcare providers through virtual town halls and webinars since they were unable to access healthcare due to COVID restrictions [34].

Our findings show that COVID-19 uprooted several aspects of community outreach and care delivery with implications towards cancer disparities. Due to social distancing policies, the usual functions of community-organizations and the COE were no longer in place. Face-to-face communications and outreach activities were replaced with virtual platforms largely excluding vulnerable populations to COVID-19, including the elderly, many of whom lacked the technical skills or resources to successfully engage with many community organizations. Healthcare systems in NYC also scaled down, deprioritized, or suspended cancer screening programs, diagnostic and treatment services for chronic conditions, including cancer [3, 12, 35]. This, coupled with patient concerns about COVID-19 exposure and inability to advocate for one’s health resulted in delays, disruptions, or abandonment of care delivery services in some instances [36]. While cancer centers and healthcare systems have acted to mitigate the repercussions of COVID-19, some practices that we observed, such as the adoption of telemedicine, continue to exacerbate existing disparities and pose additional challenges [37–39]. While the long-term consequences of these various disruptions are unknown, we saw that a multifaceted strategy in collaboration with COEs, healthcare systems, community organizations, government institutions, and universities may serve as a solution to addressing disparities amplified by COVID-19 [40].

Community organizations play an integral role in mitigating the social and health-related consequences of COVID-19 [18, 19], but many organizations initially lacked the capacity (i.e., funding, personnel, and technical support) to meet the increasing needs of their community. For instance, community organization funding from government contracts or philanthropic grants rarely pays the full cost of services delivered and often restricts their grants to direct program costs. This can result in chronic underfunding that makes responding to unexpected and evolving crises, like COVID-19, challenging [41]. Further, we found that a reduced workforce coupled with an increased demand to deliver services safely created additional strain on community organizations. NCI COEs can help to reduce the burden of underfunding during and beyond COVID-19 by partnering with community organizations and key figures to host fundraisers and by providing personnel and technical support for virtual outreach and education activities.

The main limitations of our study include recruiting community key-informants representing community organizations that partner with our NCI-designated COE. While this allowed us to capture multiple perspectives, it is possible that we did not capture the full spectrum of challenges facing community organizations providing COVID-19 outreach and engagement. It also limits the ability to generalize our findings to other populations and settings. However, the goal of this study was to quickly gather an in-depth understanding of the challenges facing community organizations working with our NCI-designated COE to inform outreach and engagement approaches that serve the specific needs of our community. These community organizations also serve a relatively large proportion of individuals within our NCA and we were able to establish consensus around the challenges facing the community despite the diversity of organizations served, adding validity to our results. We also recognize that the use of a rapid qualitative approach does not allow for the same in-depth analysis as traditional qualitative approaches, but the rapid approach was appropriate given the need to quickly inform and adapt community-engagement activities within the evolving context of COVID-19. Despite these limitations, the lessons learned and practical applications from our experience can serve as a model for other NCI-designated COE offices as they design and implement initiatives to address the health concerns of their population.

The COVID-19 pandemic is unique in that it abruptly uprooted many aspects of cancer care delivery and disrupted traditional community engagement activities—eventually calling for creativity and innovation in the community engagement process. Engaging community partners early on during the pandemic was critical in shaping, communicating, implementing, and disseminating COE efforts that were responsive to the needs of the community. Our experience reveals that COEs are well positioned to support community organizations and build upon the unique strengths of communities within their catchment area. Per Table 3, we recommend that COEs maintain an ongoing dialogue to receive feedback and allow space for learning about the dynamic priorities of communities, to be flexible in scope to social needs beyond cancer prevention and control and be prepared to shift/increase resources and develop partnerships to meet needs of community organizations and the populations they serve.

Table 3.

COE lessons learned and recommendations

COVID-19 lessons learned NCI COE groups should rapidly respond to the needs of communities beyond cancer NCI COE groups can support community organizations and partners by providing education, resources, outreach, and funding NCI COE groups may need to adapt traditional outreach efforts and develop new strategies to engage hard to reach populations Recommendations Engage in dialogue early and often to receive feedback and guidance on emerging needs of the community and the capacity of the organization to address those needs Leverage existing community partnerships to work collectively to develop plans, co-create innovative solutions, and disseminate information Use rapid data collection methods to track progress and adjust plans in response to community needs and priorities Shift/increase resources and priorities to build trust and visibility in the community