Guidance for Community Engagement With Underserved Populations in Cancer Care

INTRODUCTION

Bridging the gap between academia and the community among underserved populations requires more than good intentions—it requires understanding who comprises the communities that have been inequitably served and how to engage with those communities effectively. Community engagement is a process of developing sustained relationships to address issues that affect their well-being. In oncology, this means working collaboratively with communities to codesign, implement, and evaluate initiatives that improve cancer care and outcomes. Unlike outreach or informational campaigns, community engagement is bidirectional, long-term, and rooted in mutual trust, respect, and shared power.

TABLE 1.

Do's and Don'ts of Community Engagement With Underserved Populations in Cancer Care

Do	Don't
Prioritize bidirectional communication	Only teach or only extract information without space for feedback
Listen first	Set concrete plans before community engagement
Conduct structured listening session to understand community-identified priorities, barriers, and preferences	Rely on clinicians' or researchers' perspectives to reflect what matters most to the community
Choose appropriate engagement methods	Engage with every community in the same way
Learn the priorities and modifiable factors within the community	Assume your priorities match the interests of the community
Use trusted messengers such as community health workers, faith leaders, or community-based organizations	Assume that clinical authority alone builds trust
Build trust	Ignore community leaders or individual concerns
Provide clear pathways for follow-up care, including patient navigation, diagnostic resolution, and treatment access	Offer screening or education in isolation without ensuring downstream care coordination
Engage community partners early and consistently	Bring in community partners only for comments or simply to endorse a predesigned intervention
Evaluate intervention performance with community input	Measure success based only on clinical metrics without assessing community or patient-reported outcomes
Secure health system leadership buy-in to support staffing, navigation, and sustainability	Rely on short-term funds or temporary outreach only
Acknowledge structural barriers (eg, cost, transportation, work schedules) and build interventions to address them	Place responsibility on patients or frame low engagement as lack of motivation
Compensate community partners fairly for time, expertise, and leadership	Expect unpaid labor from community members or advisory boards
Structure for sustainability	Build a single intervention without follow-through

Despite significant advances in cancer prevention, detection, and treatment over the past decade, poor outcomes continue to disproportionately affect underserved populations across cancer types.¹ For example, rectal cancer has been observed to be over 50% more common among individuals with low educational attainment and those living in low socioeconomic status neighborhoods, even after adjusting for known risk factors, such as age, sex, family history, and race/ethnicity.² In both urban and rural settings, cancer incidence and mortality increase with increasing poverty.^3-5 Many of these disparities are seen in cancers for which screening is widely available—but only for those with the education, resources, and access to obtain them. Scientific advancements cannot fulfill their promise when communities are not meaningfully connected to cancer care innovations.

There is strong evidence that community engagement is crucial for addressing cancer-related health disparities.⁶ Although best practices continue to evolve, a collaborative effort between the National Institutes of Health, National Center for Advancing Translational Sciences (NCATS), and CDC documented key guidance with concrete central principles.⁷ Here, we offer an emphasis on the following concepts within the oncology space: bidirectional communication, trust-building, and building sustainable support and infrastructure.

GUIDANCE FOR BEST PRACTICES IN COMMUNITY ENGAGEMENT IN CANCER CARE

Bidirectional Communication

Best practices in community engagement begin with the recognition that communication is not one-way—it is a bidirectional exchange of knowledge, values, and experiences. Community members bring critical perspectives grounded in lived experience, cultural context, and community needs. In oncology, these insights shed light on cultural beliefs, access barriers, and the realities that shape cancer prevention, screening, and treatment behaviors. When partnerships are authentic and sustained, engagement fosters shared, bidirectional learning—enabling researchers and communities to codevelop strategies that are both effective and contextually relevant.

Listen First

When it comes to community engagement, building on community assets, and mitigating disparities in communities of interest, blind spots will exist. We lack understanding of many of the communities we aim to serve because of lack of diverse representation and voices in health care systems. In health care training and in health care leadership, there is no proportional representation of cultures, genders, races, or ethnicities.⁸ When our systems of learning and implementing best practices exclude the very populations most underserved by current paradigms, institutions are left with critical blind spots that cannot be addressed through internal expertise alone.

To better understand community needs, we must listen to trusted members and key partners from within those communities. Ideas for intervention originating from within the priority group differ from researchers' priorities in purely academic-led interventions. Several studies discussed best practices and strong outcomes for the role of family health champions—or family members who can encourage their loved ones to get screened more effectively than directly targeted interventions.^9-11 These are culturally specific insights and best applied precisely to each specific community and each specific community member. Community-based organizations can be important partners to provide culturally tailored interventions specific to each population because they are familiar with the culture, language, and social parameters in their own community,^12,13 allowing for more nuanced efforts at transcreation, which beyond translation also adapts messages to be more culturally salient.^14-16 One-on-one education or counseling and peer support in group settings are more likely to have community buy-in because they are tailored to the beliefs, behaviors, and culture of each learner.⁹ In the era of precision medicine and personalized medicine, tailoring outreach efforts to individual patients is both logical and aligned with our broader aim of matching interventions to the needs of the people we serve. This personalization is most effective when led by individuals who understand the patient's culture, language, and community context.

How to Engage Matters

How engagement occurs can be just as vital as what information is provided.^17,18 The communication channel(s) must also be intentionally identified (ie, with community partners or community leaders) to maximize reach and meaningful engagement of the priority population. The rapidly changing landscape of health information and disinformation on social media brings new ethical and privacy concerns as well as new opportunities for patient education.¹⁰ Active listening requires flexibility and adaptability, especially when working in communities that are by nature dynamic and ever-changing.¹⁹

For example, disseminating information only via social media platforms limits reach among populations with limited or poor access to the Internet. Examples of awareness campaigns partnered with skincare and beauty lines targeted to young minority women offer insights into how to reach people where they live, work, and play.^9,20,21 Successful examples can include the integration of health education campaigns into trusted community settings like faith-based organizations where communities naturally congregate.^22,23 This not only expands the reach of potential interventions but also increases the likelihood of success by building trust in a setting with a less stark power differential. We have seen that cancer disparities can be addressed with more relevant and acceptable interventions with greater trust and engagement when interventions are community-engaged and culturally appropriate.^19,24

Understand the Priorities and Modifiable Factors Within the Community

Educational initiatives emerging from academic medicine can serve as vital conduits between scientific discovery and underserved communities, helping to translate advances in cancer care into real-world health benefits. Modifiable risk factors such as diet, tobacco use, and UV exposure are estimated to account for almost half of all cancer morbidity and mortality.¹⁰ The scientific community works to identify which cancer risk factors are meaningful and modifiable. And, thoughtful communication to an underserved community is crucial to translation of scientific knowledge and achieving health equity.¹ Strong partnerships with community organizations are foundational to many effective educational efforts.¹⁹ It is important to acknowledge that other important factors, such as social determinants of health and cultural norms about cancer and cancer prevention, are not as easily modified. Identifying the most modifiable factors requires community knowledge and input, further focusing efforts where they can make the biggest difference.

Community insight can be particularly helpful to investigators as it both provides methods for diversifying scientific studies and informs researchers about translational science and the realities of real-world implementation. Clinical trials are notably limited by a lack of diversity in recruitment. More than 20 studies demonstrate that education is a determinant of participation in clinical trials.¹¹ Increasing education within a community, in turn, has the potential to increase new scientific knowledge by leveraging participatory methods.^21,25-27 Before inclusion in studies, the design of those studies is also improved by community input on what is most important to them and what current needs are. A large group of community advocates described two of the most essential components for successful interventions as asking the target population what they want and involving a multitude of stakeholders including patients, survivors, physicians, nurses, and local organizations and governments.⁹ Working with target populations to better understand their needs and including a broad variety of stakeholders inform the scientific questions we ask.

Build Trust

Building trust is essential for community partnership and meaningful engagement with populations that experience health disparities or are underserved. As mentioned, this starts with listening, and then the listening must be followed through with respect for community priorities and ongoing communication and adjustments. The relationship with the community requires ongoing nurture and commitment that extends beyond a single episode or grant. A key component of trust-building requires follow-through and accountability to the community voices and needs.

Having real relationships within a community increases the success of educational initiatives. In some cases, community education for underserved groups is best tackled by community health workers already engaged in existing interventions not focused on that specific minority group, but who are members of that group themselves.^9,28 Community health workers can form a vital and extremely powerful link with the community.^29-35 Because of the importance of community buy-in and cultural understanding of a community, empowering those who are already recognized as leaders in their community has been shown to be an effective strategy. Furthermore, communities may be more likely to trust initiatives when they know they were cocreated with community members, patients, survivors, and advocacy groups.⁹

New barriers to trust between the community and the cancer center continue to emerge. The COVID-19 pandemic changed the dynamics of public trust in the medical system and underscored vulnerabilities and valid concerns of underserved populations.¹⁰ Current, active, and ongoing debate on the risks and benefits of routine vaccines is rampant in the United States. The work to both foster trust and engage with across differences and misunderstanding is ever more vital to the health of our communities.

Structure for Sustainability

Building sustainable community outreach and education programs requires cultivating long-term relationships in which each success builds upon previous experience. Community members and health professionals alike cite enduring long-term relationships as central to the success of community partnerships.²⁴ Decades of research has taught important lessons on the need for sustainability with working with underserved communities. Some well-intentioned initiatives by academic researchers dissolve after grants have been spent or researchers have moved on. This can erode progress and damage hard-earned trust.

One example of a well-intentioned intervention occurs with raising awareness about cancer screening without ensuring access to follow-up care. Some community advocates are rightly skeptical increasing screening without addressing subsequent health inequities in diagnosis, treatment, and financial burden.⁹ These problems are entrenched, multifaceted, and challenging to solve. However, a long-term partnership is the only possible way any of these complex issues can start to be ameliorated as ongoing interventions at all stages are necessary.

More specifically, the single mammogram van servicing an impoverished community is one of the best examples of this challenge. When offering free screening mammograms to women, ensuring that proper follow-up is ready when the results are abnormal needs to be part of the program. Several studies have demonstrated challenges with mobile mammography, including delays,³⁶ lower adherence to follow-up,³⁷ and higher recall and incomplete report rates.³⁸ All too often women engage with screening only to walk away with more challenges reaching diagnostic resolution.³⁹ These interventions may have some harm associated without ensuring proper care, comprehensive follow-up, and other supportive interventions that can ameliorate these challenges. With careful engagement, creating sustainable, long-term partnerships with the community can ensure that high-quality interventions are possible.

DISCUSSION

In conclusion, community engagement is vital when addressing the needs of underserved populations. Best practices to consider for optimal community engagement include the following: (1) listening first to understand root concerns, (2) carefully consider how to engage and what to focus on, (3) ensure bidirectional understanding and flexibility, (4) build trust with respect and follow-through, and (5) structuring engagement for sustainability is essential. (See Table 1).

AUTHOR CONTRIBUTIONS

Conception and design: Quinn S. Solfisburg, Simona C. Kwon, Beverly Moy, Naomi Y. Ko

Administrative support: Victoria Foster, Simona C. Kwon, Naomi Y. Ko

Provision of study materials or patients: Simona C. Kwon, Naomi Y. Ko

Collection and assembly of data: Quinn S. Solfisburg, Naomi Y. Ko

Data analysis and interpretation: Quinn S. Solfisburg, Suzanne Vang, Victoria Foster, Naomi Y. Ko

Manuscript writing: All authors

Final approval of manuscript: All authors

Accountable for all aspects of the work: All authors

AUTHORS' DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST

Guidance for Community Engagement With Underserved Populations in Cancer Care

The following represents disclosure information provided by authors of this manuscript. All relationships are considered compensated unless otherwise noted. Relationships are self-held unless noted. I = Immediate Family Member, Inst = My Institution. Relationships may not relate to the subject matter of this manuscript. For more information about ASCO's conflict of interest policy, please refer to www.asco.org/rwc or ascopubs.org/op/authors/author-center.

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