One Herd: A Community Storytelling Campaign for Equity in Adolescent and Young Adult Cancer Survivorship

Abstract

Background:

Community-based organizations play an essential yet underrecognized role in addressing health inequities faced by adolescent and young adult (AYA) cancer survivors, particularly those from underrepresented communities. Elephants and Tea, a nonprofit organization, launched One Herd, a digital storytelling and health equity campaign designed to elevate lived experiences of underserved AYA survivors. This manuscript describes the conception and development of that campaign and presents findings from its needs assessment.

Methods:

One Herd followed a five-phase process: (I) assembling a multidisciplinary advisory team of underrepresented AYA survivors; (II) identifying campaign priorities and conducting a national needs assessment to inform content development; (III) analyzing survey findings and creating survivorship-centered content; (IV) disseminating content through digital, print, webinar, and live storytelling platforms; and (V) evaluating campaign reach and perceived impact. A national needs assessment identified social and structural barriers to equitable survivorship care, guided by social determinants of health and community-engaged frameworks.

Results:

Eighty-one AYA cancer survivors completed the survey; 76 were included in the final analysis. Participants reported multilevel inequities, including limited access to fertility preservation resources, perceived bias and discrimination in healthcare, and unmet needs for peer connection and identity-affirming support. Findings informed the development of survivor-centered digital storytelling and educational materials for community and provider audiences. Dissemination formats included a print and digital magazine, webinars, and live storytelling events, with workforce education integrated into Elephants and Tea’s AYA Program for Oncology Workforce Education and Resources (AYA POWER). Early feedback identified survivor stories as the most impactful campaign component.

Conclusions:

One Herd demonstrates how community-led, research-informed storytelling can operationalize narrative equity and bridge survivor experience with systems-level education in AYA cancer care.

Introduction

More than 2.1 million adolescent and young adult (AYA; ages 15-39 at diagnosis) cancer survivors currently live in the United States,¹ and this number continues to grow.² AYAs represent an increasingly distinct population,³ with specific and enduring health and psychosocial needs across the cancer continuum.^4,5 Despite advances in survivorship care and overall cancer care delivery, persistent disparities remain both among and within AYA subgroups. These disparities are influenced not only by medical factors but also by the broader social determinants of health (SDOH), including the conditions in which individuals, live, work, and access care that shape cancer outcomes and survivorship experiences.^6-9

AYA survivors experience multiple inequities, including longer delays in diagnosis compared to other age groups,^10,11 heightened psychosocial distress during a sensitive developmental period,^12,13 financial hardship;^14-16 and challenges related to fertility planning and family building.^17,18 These inequities are compounded for AYAs with racial, ethnic, sexual and gender minority backgrounds, and low-income communities,^19,20 who experience disparities in diagnosis, treatment access, survivorship, and cancer-specific survival.^3,21,22

Because most AYAs receive their oncology care in community oncology settings rather than academic cancer centers, accessible community-based supportive care is critical.^3,23 Nonprofit and other community organizations have sought to fill a major gap in addressing unmet needs and challenges including efforts to mitigate disparities, but their efforts have been largely unstudied.^24-26 Nonprofit and community-based organizations have increasingly sought to address these disparities by offering tailored support, peer connection, advocacy, and culturally responsive programming to some of the most marginalized AYA survivors.^27,28 They also create opportunities for storytelling, a therapeutic practice shown to foster meaning-making, healing, and identity expression, in the wake of a traumatic experience such as cancer.²⁹

Through sharing of these meaningful stories, AYAs can communicate messages containing their identity, unique life experiences, and perceived meaning of the events.³⁰ In response to ongoing calls to advance antiracist and equity-centered approaches in AYA cancer care,^31-33 this manuscript describes the development and implementation of the One Herd content campaign, a community-led initiative designed to amplify lived experiences of underserved AYA survivors and translate those narratives into educational tools for healthcare providers and the broader oncology workforce.

Elephants and Tea

Elephants and Tea is a community-based organization that serves AYAs with cancer, caregivers, and healthcare professionals globally.³⁴ Founded in 2018, as the nonprofit media brand of the Steven G. Cancer Foundation, the organization’s mission is to ensure that AYAs facing cancer know they are not alone in their experience. They accomplish this mission through multiple initiatives including: 1) a free quarterly print and digital magazine featuring stories written by AYA cancer patients and survivors; 2) digital and in-person programs designed to connect AYAs and foster community; and 3) partnerships with healthcare institutions, researchers, and nonprofit organizations supporting AYA cancer care.

One Herd Content Campaign

In early 2021, leadership at Elephants and Tea identified an opportunity to leverage the organization’s storytelling platform and AYA cancer community trust to address persistent inequities in AYA survivorship. In partnership with This Exceptional Journey (TEJ) Media (https://thisexceptionaljourney.com/), the organization “The One Herd Content Campaign: The State of Underserved Communities Facing AYA Cancer” (hereafter, “One Herd”).³⁵ One Herd is a multi-year initiative designed to elevate the experiences of medically underserved and underrepresented AYAs while translating those narratives into educational content for healthcare professionals and community audiences. Launched in September 2022, One Herd employs an integrative model that combines qualitative storytelling with community-engaged data collection to identify structural gaps in care and disseminate findings across both survivor-facing and provider-facing platforms. The campaign is organized into five phases: I) Team Construction; II) Research Initiatives and Goal Setting; III) Data Analysis and Content Creation; IV) Marketing and Dissemination; and V) Evaluation (Table 1). Table 1 details each phase with a brief description of activities, and the corresponding time of implementation.

Table 1.

One Herd Campaign

Phase	Time Period	Description
I. Team Construction	September - October 2022	Formalized partnership with TEJ Media Developed advisory team of AYAs with relationship to underrepresented communities (N=6)
II. Setting Research Initiatives	November 2022 - July 2023	Agenda setting for research initiatives Formalized needs assessment for underrepresented AYAs with cancer Launched and completed needs assessment recruitment and data collection
III. Analyzing Data and Content Creation	July 2023 - August 2024	Analyzed needs assessment data Identified gaps in supporting underserved AYA cancer communities Created a content strategy for marketing campaign with the goals of bringing awareness to underserved AYA cancer survivors
IV. Marketing and Dissemination	August 2024 - June 2025	Dissemination and execution of marketing strategy Website Digital and print magazine Academic and community presentations Webinars Conferences with US partners
V. Evaluation and Review	July 2025 - Present	Formal campaign evaluation Review initial goals and objectives

AYA, adolescent and young adult; TEJ, This Exceptional Journey

Phase I: Team Construction

Campaign Development.

Phase 1 focused on assembling the One Herd advisory team. Elephants and Tea leadership (NG, KF, RM) collaborated with TEJ Media (YM) to recruit six community advisors who were themselves underrepresented AYA cancer survivors and recognized thought leaders in survivorship, health equity, mental health, health communication, epidemiology, and nursing.³⁶ Advisors contributed both lived expertise and professional insight in shaping the campaign’s direction. Responsibilities included: participation in quarterly meetings; co-development of research questions (Phase II); interpretation and refinement of preliminary findings (Phase III); facilitating connections with aligned and allied organizations to expand campaign reach (Phase IV); and contributing to program evaluation (Phase V). Advisory members were offered either a $500 honorarium or the option to direct a $500 charitable contribution to an organization supporting underserved AYAs. This compensated, community-engaged advisory structure was intended to ensure accountability, representation, and power-sharing in the conception and deployment of the campaign.³⁷

Phase II: Research Initiatives and Goal Setting

Needs Assessment Design and Recruitment.

Phase II established the research priorities guiding the campaign. Through iterative discussion between January and February 2023, the One Herd advisory group identified a needs assessment as a foundational activity to inform equity-focused content development.^38-40 Survey domains were selected based on (1) literature describing unmet supportive care needs and survivorship inequities among AYAs,^41-45 and (2) conceptual guidance from the World Health Organization’s Social Determinants of Health (SDOH) Framework,⁴⁶ the National Institute on Minority Health and Health Disparities Research Framework,^47,48 and Bronfenbrenner’s Social Ecological Model.⁴⁹ Survey content included sociodemographic characteristics, social needs, perceived experiences with the care team, social support, fertility-related care, mental health, spirituality, and storytelling.

The survey assessed domains associated with health-related social needs known to influence survivorship experiences, including transportation, financial toxicity, housing stability, social support, and community connection.^{9,23,41,44,50} These domains are reflective of SDOH mechanisms known to contribute to inequities in AYA cancer survivorship. A targeted national recruitment strategy was used, including outreach to hospitals with AYA programs, nonprofits, and industry partners who had accessed Elephants & Tea resources in the past (N=10). The final instrument and domains are detailed in Appendix A, and a recruitment flyer in Appendix B. The University of Rochester institutional review board (IRB) deemed this study exempt and not requiring of IRB oversight; data shared with researchers were not linked to identifiers and were not considered human subject research.

Phase III: Data Analysis and Results

Needs Assessment Findings.

Phase III included data analysis and early content strategy development. A total of 81 respondents participated in the needs assessment; 76 were retained for analysis (Table 2). Survey data were analyzed using descriptive statistics, including means and standard deviations for continuous variables and frequencies and percentages for categorical variables. Findings are summarized across three levels of influence (domains):⁴⁷ (1) individual (e.g., sociodemographic characteristics and social needs); (2) interpersonal (e.g., perceived interpersonal bias and discrimination, and interpersonal support and communication); and (3) community and societal (e.g., institutional resources).

Table 2.

Needs Assessment Participant Characteristics (N=76)

		Mean ± SD
Individual Level	Age at diagnosis	28 ± 8.26
	Treatment status	n (%)
	Currently in treatment	15 (19.7)
	1-5 years post-treatment	38 (50)
	>5 – 10 years post-treatment	7 (9.2)
	>10 years post-treatment	11 (14.5)
	Missing	5 (6.6)
	Race/Ethnicity
	Asian or Asian American	4 (5)
	Black or Black American	3 (4)
	Hispanic or Latino	2 (3)
	White	59 (79)
	Multi-racial	7 (9)
	Missing	1 (1)
	Gender
	Cisgender Woman	65 (86)
	Cisgender Man	6 (8)
	Non-binary	3 (4)
	Transgender Woman	1 (1)
	Transgender Man	1 (1)
	Sexual orientation
	Asexual	3 (4)
	Bisexual	6 (7.9)
	Heterosexual or straight	58 (76.3)
	Lesbian	1 (1.3)
	Pansexual	1 (1.3)
	Queer	4 (5.2)
	More than one sexual identity (e.g., Asexual and queer)	3 (4)
	Relationship status
	Cohabiting with a significant other/ domestic partnership	10 (13)
	Divorced	3 (4)
	Married	27 (36)
	Single, never married	36 (47)
	Geography
	Rural	10 (13)
	Suburban	38 (50)
	Urban	28 (37)
	Religion
	Buddhism	2 (3)
	Catholic (e.g., Roman, Latin)	9 (12)
	Christian/Christianity	15 (19)
	Greek Orthodox	1 (1)
	Hinduism	1 (1)
	Islam	2(3)
	Judaism/Jewish	6 (8)
	Other (e.g., non-denominational or spirituality)	2 (3)
	Do not practice religion (e.g., left blank, agnostic, atheist)	38 (50)
	Employment status at diagnosis
	Employed	57(75)
	Not employed	19(25)
	Current employment status
	Employed	49(64)
	Not employed	27 (36)
	Current health insurance
	Medicaid/Supplemental Security Income (SSI)	5 (7)
	Medicare	1 (1)
	Military (Veterans Administration)	1 (1)
	Private insurance	55 (72)
	No insurance	2 (3)
	Do not know	2 (3)
	Other	3 (4)
	More than one insurance (e.g., Medicaid and private insurance)	7 (9)
	Transportation for cancer-related care
	Own vehicle	13 (17)
Public transportation	1 (1)
Ride from family	8 (11)
Ride from friend	1 (1)
More than one transportation (e.g., own vehicle & ride from family)	53 (70)
Relocation back home
No	54 (71)
Yes	22 (29)
Perceived financial toxicity
No	37 (49)
Yes	39 (51)
Received financial assistance from family or friends
No	37 (49)
Yes	39 (51)
Interpersonal Level	Satisfaction with care team
	Very satisfied	39 (51)
	Satisfied	28 (37)
	Neither satisfied nor dissatisfied	5 (6)
	Dissatisfied	2 (3)
	Very dissatisfied	2 (3)
	At ease with care team
	No	5 (7)
	Yes	65 (85)
	Do not know	6 (8)
	Perceived bias from care team
	No	46 (61)
	Yes	20 (26)
	Do not know	10 (13)
	Perceived discrimination from care team
	No	58 (76)
	Yes	15 (20)
	Do not know	3 (4)
	Fear unfair treatment for reporting discrimination
	No	50 (66)
	Yes	5 (6)
	Do not know	21 (28)
	Perceived support at home
	No	4 (5)
	Yes	72 (95)
	Primary caregiver
	Friend	2 (3)
	Parent	23 (30)
	Partner/Spouse	22 (29)
	Sibling	1(1)
	Other	5 (7)
	More than one primary caregiver	23 (30)
	Connection with peers
	No	49 (64)
	Yes	27 (36)
	Shared “cancer story” with friends/acquaintances
	No	4 (5)
	Yes	72 (95)
	Shared “cancer story” with strangers
	No	23 (30)
	Yes	53 (70)
	Shared “cancer story” on social media
	No	56 (74)
	Yes	20 (26)
	Ease of sharing story
	Very easy	16 (21.1)
	Easy	10 (13.2)
	Somewhat easy	17 (22.4)
	Neutral	12 (15.8)
	Somewhat difficult	14 (18.4)
	Difficult	4 (5.3)
	Very difficult	2 (2.6)
	Not applicable (‘I have not shared my story’)	1 (1.3)
	Attended in-person cancer community events
	No	32 (42)
	Yes	44 (58)
	Development of new friendships or resources from the in-person cancer community events
	No	9 (12)
	Yes	37 (49)
	Did not attend an in-person event	30 (39)
Community and Societal Level	Spiritual support at hospital
	No	12 (16)
	Yes	34 (45)
	Do not know	30 (39)
	Fertility discussed
	No	29 (38)
	Yes	47 (62)
	Presented with fertility preservation options
	No	38 (50)
	Yes	36 (47)
	Do not remember	2 (3)
	Presented with financial support options for fertility preservation
	No	59 (78)
	Yes	8 (10)
	Do not remember	9 (12)
	Provided information on mental health support
	No	24 (31)
	Yes	40 (53)
	Do not remember	12 (16)
	Provided support group options
	No	37 (49)
	Yes	39 (51)
	Saw a therapist prior to cancer diagnosis
	No	48 (65)
	Yes	26 (35)
	Currently seeing therapist
	No	27 (36)
	Yes	49 (64)
	Preference for mental health support
	Larger support group settings	7 (9)
	One-on-one support	37 (49)
	Do not have a preference	32 (42)

Note. Bias was defined as, “prejudice in favor of or against one thing, person, or group compared with another, usually in a way considered to be unfair.” Discrimination was defined as, “unjust or prejudicial treatment of different categories of people, especially on the grounds of ethnicity, age, sex, or disability.”

Financial toxicity was defined as, “the negative impact medical expenses can have on patients in terms of their health-related quality of life, leading to negative mental and physical effects as well as, in some cases, bankruptcy, loss of job or income, or even homelessness.”

Individual-level sociodemographic characteristics.

Participants had an average age at diagnosis of 28 (±8.3) years. Twelve percent identified as Asian/Asian American, Black/ African American, or Hispanic/Latino. The majority were cisgender women (86%), heterosexual (76%), employed (64%), and privately insured (72%). Approximately half were married or cohabiting with a significant other (49%), resided in suburban areas (50%), reported no religious affiliation (50%), and were less than five years post-treatment (50%).

Individual-level social needs.

Seventy percent of AYA cancer survivors relied on multiple modes of transportation for cancer-related care, and 29% relocated to a parent’s home for treatment. Financial strain was common (51%), with many relying on financial support from family/friends.

Perceived interpersonal support and communication.

Over one-quarter (26%) reported perceived bias from healthcare professionals during treatment, and 20% reported perceived discrimination from their care team during treatment. Most of the AYA respondents did not feel connected to peers during treatment (64%), though 95% reported feeling supported at home. Storytelling practices varied: the majority shared their story with strangers or friends and acquaintances (70-95%), while fewer disclosed on social media (26%). One quarter (26%) expressed difficulty articulating their cancer story. Nearly half (49%) reported forming new connections or accessing cancer-specific resources through in-person community events.

Perceived institutional-level support services.

Less than half (45%) of AYAs who responded reported access to spiritual or religious support through their treatment center. Fertility counseling and preservation support were particularly limited; 38% were not counseled on fertility, 50% were not offered preservation options, and 78% were unaware of financial assistance for fertility-related care. Half received information on mental health services (53%) or support groups (51%). One-on-one mental health care was strongly preferred (49%) over group-based support (9%). While 65% has not previously engaged with therapy before diagnosis, 64% reported currently seeing a therapist.

Within this formative sample, findings highlighted several multilevel gaps in supportive care relevant to the campaign’s equity-focused content development. Despite strong social support from family, AYA survivors lacked sustained peer connection during treatment, and some reported difficulties articulating their cancer story, suggesting unmet psychosocial and health communication needs. Structural barriers were also prominent: participants reported limited access to spiritual or religious services and a lack of or minimal awareness of fertility counseling, preservation resources, and financial assistance options for fertility preservation, which may underscore inequities in both information delivery and care navigation. Reports of perceived bias and discrimination within healthcare interactions further indicate that these gaps are not solely resource-based, but also relational and systemic. Collectively, these findings illustrated how AYA cancer survivors continue to face concurrent social, financial, and institutional barriers that are insufficiently addressed through traditional survivorship models.

Phase IV: Marketing and Dissemination

Campaign Implementation.

Phase IV included dissemination of content created through the marketing campaign to both community and provider audiences. In response to the gaps identified through the needs assessment, the One Herd team developed a content strategy designed to translate findings into equity-focused storytelling and workforce education. In parallel with data analysis above, AYAs who expressed interest in sharing their lived experiences were invited to submit narrative pieces (N=10). These narratives were integrated into the campaign using visual storytelling elements (e.g., photos, digital graphics) to reinforce representation, promote identity expression, and contextualize structural barriers within real-world survivorship experiences (Figure 1). The strategy intentionally linked community voice with educational messaging to increase relevance for community health workers, patient navigators, and healthcare professionals serving underserved AYA populations.

Figure 1. Illustrative Examples of Digital Storytelling from the One Herd Community-Based Equity Campaign.

(A) Cover of Elephants and Tea One Herd issue; (B) Reflective narrative by Yolanda Murphy describing her experience with One Herd; (C–E) Selected participant narratives authored by Tamron Little, Cody Morrison, and Bryan Walker, respectively.

Dissemination strategies included a dedicated landing page for the One Herd program (microsite);³⁵ a Digital and Print Magazine- One Herd: Giving a Voice to All;³⁶ academic and community presentations,⁵¹ and webinars featuring panel discussions. See Appendix C for exemplars of these digital creative reports where needs assessment survey findings are complemented with personal stories from AYAs. In addition to virtual reach, the campaign was delivered across multiple in-person community events hosted in collaboration with partner hospitals and nonprofit organizations nationwide.

Additionally, we developed in-person and virtual events across the country with our partnering hospitals and organizations to disseminate the content campaign. One flagship event, a magazine launch in Buffalo, New York in September 2024, combined live storytelling with supportive care workshops (e.g., Healing Through Writing, Movement, and Creative Arts) to model narrative-based survivorship support in practice. Campaign findings were also integrated into Elephants and Tea’s AYA Program for Oncology Workforce Education and Resources (AYA POWER) in May 2025,⁵² where One Herd advisory team members and two storytellers presented results from the needs assessment alongside their lived experiences.

Phase V: Evaluation and Review.

Preliminary Evaluation.

Phase V is the final phase of One Herd and represents an ongoing evaluation period designed to assess the impact of the campaign as dissemination continues. Rather than a single endpoint assessment, evaluation is occurring iteratively and across multiple audiences. Healthcare professionals and AYAs are invited to provide feedback through post-event surveys. Initial evaluation surveys have already been distributed to participants of the AYA POWER session, and additional feedback will be collected from attendees of subsequent in-person and virtual events. The May 2025 POWER session had 40 virtual live attendees across multiple health disciplines. Eight attendees completed the post-session survey, and overwhelmingly respondents felt the first-person stories shared during the session were the most meaningful from the One Herd campaign.

This ongoing approach to evaluation allows the team to continuously assess changes in awareness, knowledge, attitudes, and survivor-centered communication practices, while also capturing the lived relevance of the campaign for AYA cancer survivors themselves. Findings from the evaluation will inform refinement of the content strategy and guide future directions for scaling this community-informed, equity-focused model of digital storytelling and workforce education.

Discussion

The One Herd content campaign represents an innovative and community-driven model for integrating research-informed digital storytelling into community-based AYA survivorship programming. By combining formative needs assessment data with narrative storytelling, the campaign demonstrates how lived experience can inform educational initiatives and workforce engagement.

Although the needs assessment sample was predominantly White, cisgender, and female, the broader campaign intentionally incorporated equity-centered approaches through multiple mechanisms. These included the formation of an advisory board composed of underrepresented AYA survivors and the integration of diverse lived-experience narratives through the storytelling component of the campaign. Accordingly, survey findings should be interpreted as formative insights used to guide campaign development rather than as a comprehensive representation of all underserved AYA cancer survivor populations.

Storytelling remains underutilized in oncology research and practice^29,53,54 despite evidence that narrative approaches can enhance psychosocial well-being, identity formation, and social connection among AYAs.^29,56,55 To our knowledge, One Herd represents the first to be systematically documented and evaluated. There have been novel approaches to engaging and partnering with AYAs to improve AYA cancer care and narrow outcome disparities, such as engaging with “social media influencers.”⁵⁷ This campaign is unique in its explicit design as a research-informed, community-led initiative that translates lived experience into equity-focused workforce education and systems-level awareness.

Community-based organizations are uniquely positioned to facilitate these narratives because they operate outside traditional clinical structures and often have deeper trust among survivor communities. This campaign further supports storytelling as a meaningful equity strategy, particularly for AYAs from historically marginalized communities whose experiences are often absent from traditional oncology narratives and institutional datasets. Both community -based organizations and academic researchers who engage with AYAs should consider integrating digital stories into their programming and research studies.⁵⁶

An additional observation from the campaign was the emergence of other forms of marginalization, such as disability, neurodiversity, and weight-related stigma, that are rarely centered in the AYA cancer literature.^58-60 These insights highlight the importance of intersectional approaches when addressing survivorship inequities.

The mean age at diagnosis of 28 years suggests that the needs assessment may reflect experiences more characteristic of young adulthood than adolescence. Developmental differences across the AYA age continuum may influence survivorship experiences, indicating the need for future research that explores age-specific survivorship needs.

Community-based organizations like Elephants and Tea occupy a unique position in the AYA cancer care delivery landscape: they are embedded in the lived realities of AYA cancer survivors, trusted by historically excluded groups, and structurally nimble enough to surface narratives that clinical settings often overlook. In recognition of this role, Elephants and Tea has begun institutionalizing equity-oriented organizational practices by: incorporating inclusive demographic and identity measures into registration systems to better reflect those served; intentionally curating and amplifying stories from AYAs across diverse racial, ethnic, disability, sexual orientation, gender identity, body size, and neurodiversity backgrounds; and partnering with media organizations such as TEJ Media to extend the reach of these narratives beyond oncology-specific spaces and into broader public discourse to influence cultural understanding and policy dialogue.

These multilevel gaps illustrate not only unmet supportive care needs, but also the importance of community-driven approaches that amplify lived experiences and translate survivor narratives into tools for education, advocacy, and systems-level improvement. Storytelling in this context is not merely expressive; it functions as a mechanism of representation, accountability, and narrative justice for populations historically excluded from cancer discourse and survivorship research. By intentionally creating structured space for underrepresented voices, the campaign affirms the visibility of AYAs whose identities, needs, and experiences are often rendered peripheral or invisible within traditional care delivery models.

This work has several limitations. First, although the One Herd campaign was designed to center underserved and historically marginalized AYA survivors, the needs assessment sample was predominantly White, cisgender, heterosexual, and female, limiting generalizability to the broader diversity of marginalized AYA survivors. Second, the survey collected limited clinical variables and did not assess cancer type or treatment modality, which may influence survivorship needs. Third, the survey assessed perceived availability rather than participant preference for certain services, such as spiritual care. Finally, evaluation findings reflect early feedback from dissemination activities rather than long-term campaign impact.

The urgency of this work is heightened by current sociopolitical threats to equity infrastructure and data visibility in the United States.^61,62 Federal actions aimed at restricting diversity, equity, and inclusion (DEI) efforts, including Executive Orders targeting gender identity, the collection of SOGI (sexual orientation and gender identity), and race data, represent not just administrative shifts but mechanisms of erasure.^63-66 When demographic reporting and identity data are restricted, the communities most affected by disparities become statistically invisible, making inequities harder to document, resource, or remediate. In this landscape, community-based storytelling assumes an even more critical role as a countervailing force: it preserves visibility, affirms lived experience, and sustains truth-telling in spaces where policy threatens to narrow whose stories “count.”

Conclusion

The One Herd campaign demonstrates how community-based organizations can operationalize narrative equity by integrating storytelling, research, and workforce education. By amplifying survivor voices and translating lived experience into educational content, community-led storytelling initiatives offer a promising strategy for addressing structural inequities in AYA cancer survivorship.

Data availability statement:

The data that support the findings of this study are available from the corresponding author upon reasonable request.