Partnering With Social Media Influencers to Equitably Improve Adolescent and Young Adult Cancer Outcomes: A Novel Strategy to Support Cancer Care Delivery

INTRODUCTION

Approximately 90,000 adolescents and young adults (AYAs) between age 15 and 39 years are diagnosed with cancer each year in the United States.¹ Despite increased attention to the distinct needs of AYAs and improved survival rates for some cancers, disparities persist. Marginalized AYAs who identify as Black, Hispanic, living in poverty, and/or with insurance gaps have poorer survival across many cancers, compared with White, non-Hispanic, higher-income, and privately insured AYAs.² AYAs with acute lymphoblastic leukemia have lower survival rates than younger children, and AYAs with sarcomas, CNS tumors, and colorectal cancer have experienced minimal survival improvement over the past few decades.³ Many AYAs, regardless of cancer type, will experience disparities related to one or more health-related challenges, including suboptimal medication adherence, inadequate oncofertility and/or genetic counseling, greater symptom burden, more financial toxicity, and low survivorship care utilization.⁴ These psychosocial challenges are generally more prominent among marginalized groups who face discrimination and systemic barriers to care, including sexual and gender minority AYAs.⁵ To accelerate treatment advances, there is an urgent need to improve these short- and long-term health disparities by optimizing AYA cancer care.

The National Cancer Institute Community Oncology Research Program defines cancer care delivery as a multidisciplinary field that studies how multilevel factors, including health technologies, affect cancer care access and outcomes.⁶ Given that AYAs are digital experts with nearly universal smartphone ownership across demographic groups,⁷ digital tools (eg, apps) are promising for enhancing cancer care. Digital approaches with AYA cancer survivors have been acceptable, feasible, and associated with improvements in cancer-related outcomes.⁸ However, to yield real-world benefits, such tools must be accessible to AYAs and engaging enough to get their attention. Lack of engagement continues to limit the utility and efficacy of digital tools. For example, in a study of the Re-Mission videogame for cancer medication adherence, only 28% of AYAs engaged in the requested 1 hour of weekly engagement.⁹ Moreover, many digital tools for AYAs have not been efficiently translated to clinical and community settings.¹⁰ Thus, we risk chasing the potential of digital health in research without achieving impact in practice, including replicating the inequities of brick-and-mortar care (eg, inaccessibility).

While scientists struggle to uncover the right way to design new digital health tools to sufficiently reach AYAs (eg, cancer-specific apps), social media engagement is unparalleled. More than half of US teens report that they use the Internet almost constantly.⁷ Black and Hispanic teens, populations which researchers have historically struggled to engage in research, have higher Internet use compared with White teens. In recent years, influencers have become prominent on social media, including within AYA cancer communities. Influencers include actual patients who have undergone cancer treatment as an AYA and who regularly post about cancer on social media and have more followers than the average individual (typically ≥10,000 followers, also known as a microinfluencer).^1,2 For example, Coauthor, C.G. is the founder and content creator of @ohyouresotough, with >20,000 Instagram followers. She is a YA survivor, artist, and advocate who posts original cancer content while offering a forum to elevate the current views and experiences of AYAs. Together, this raises an important consideration for AYA care delivery and the utility of digital tools in terms of how we can meet AYAs from diverse backgrounds where they are rather than requiring them to access and adopt a new technology.

This commentary discusses how forming partnerships with social media influencers offers a novel strategy for supporting cancer care delivery, with the potential for equitably improving AYA cancer outcomes across the cancer continuum (Fig 1). First, we briefly review cancer care delivery needs and prior social media approaches for AYAs with cancer. Second, situated in a health equity framework,¹¹ we explore how forming partnerships with cancer influencers has implications for improving AYA cancer care and narrowing outcome disparities. Third, we call to action researchers, clinicians, and cancer agencies to form partnerships with influencers, as defined by community-based participatory research methods, to broadly reach and engage AYAs. We provide examples from our experiences building capacity with influencers who form a Community Advisory Board (CAB; coauthors C.G., E.H.-B., C.M.) to prepare to address AYA cancer disparities via codesigned social media campaigns.

FIG 1.

The potential to address AYA cancer care domains and disparities through influencer partnerships: application of the ConNECT Framework. Cross-cutting the above ConNECT principles, the fifth principle calls for specialized training of the workforce to conduct community-engaged health equity research. It could also involve educating and empowering influencers to coparticipate in the research process (eg, cowriting grants and papers, serving as digital peer navigators/interventionists with their platforms). AYA, adolescents and young adult.

WHAT ARE THE CANCER CARE DELIVERY NEEDS OF AYAs?

Cancer care delivery research has been defined as understanding and addressing the inequities that lead to poorer cancer outcomes among AYAs.¹² A recent Children’s Oncology Blueprint summarized AYA cancer care delivery needs as disparate: (1) cancer treatment outcomes (eg, survival disparities based on treatment setting, social determinants of health, suboptimal clinical trial enrollment, poor treatment adherence); (2) supportive care and symptom management outcomes (eg, higher psychosocial distress, more symptoms and morbidities, inadequate reproductive and sexual health care, and increased financial hardship averaging $259,324 US dollars per AYA over a lifetime)¹³; and (3) cancer survivorship and prevention outcomes (eg, care disengagement and suboptimal access to genetic screening and counseling).⁴ These AYA-specific disparities have been attributed to differences in cancer biology, neurodevelopmental experiences, and forms of racism/oppression that affect AYAs from marginalized sociodemographic backgrounds.¹⁴ To enhance cancer care for AYAs, approaches must be multilevel (addressing individual, clinician, institutional, and systemic barriers to care), nimble (to fit the needs and preferences of AYAs at the time), and innovative (to reach AYAs across location, treatment setting, and the cancer trajectory).^4,15

DO AYAS USE SOCIAL MEDIA IN CONNECTION WITH CANCER CARE?

There is ample evidence that AYAs with cancer and survivors are using social media as a means of searching for cancer information and emotional support.¹⁶ Social media offers AYAs opportunities that are developmentally salient, including for connecting and belonging,¹⁷ which is particularly relevant for AYAs with cancer with limited options for connecting with their same-age cancer peers. In a meta-analysis that included any-aged cancer samples, social media-based interventions were associated with significant improvements in quality of life and anxiety symptoms.¹⁸ Still, we cannot neglect the actual or potential harms of social media, including the flow of health misinformation. Not all influencers share supportive or correct information, some have for-profit intentions of selling unregulated products or services (eg, supplements, cancer coaches). As such, recent guidance for AYAs, including from the US Surgeon General,¹⁹ emphasizes the quality of activities/interactions on social media rather than the quantity of time.

Only a few social media interventions have been developed for AYAs, such as private, moderated discussion groups with English-speaking AYAs (Table 1). We piloted partnerships with influencers to cocreate and codisseminate social media content targeting oral chemotherapy adherence.²³ Of note, social media approaches appear to be more engaging when the discussions were facilitated by cancer peers rather than investigators. Although there are several examples of using social media campaigns to spread cancer prevention information to the general population of AYAs (eg, for human papillomavirus vaccination), campaigns have not yet been deployed to shape AYA cancer behaviors at the population-level.

TABLE 1.

Examples of Social Media Interventions/Approaches for Addressing AYA Disparities

Program	Target Population	Intervention Goals	Social Media Component	Published Outcomes	Implementation Considerations
Photographs of Meaning Program20	AYAs with cancer and survivors (age 15-34 years at diagnosis), English-speaking	10-week intervention designed to help patients sustain and enhance a sense of meaning, purpose, and peace	Participants post photographs and accompanying narratives through a social media platform	Lower depressive symptoms and better quality of life postintervention, which were maintained 2 months later. High rates of study satisfaction	Male AYAs were significantly less likely than female AYAs to fully complete the intervention
FITNET Facebook Group21	YA cancer survivors (between age 21 and 39 years), English-speaking	12-week intervention aimed at improving moderate-to-vigorous intensity physical activity	FITNET is a behavioral intervention with messages and moderated group discussions delivered through Facebook	Both FITNET and the self-help control improved moderate-to-vigorous activity; FITNET group had greater improvement in light physical activity and weight loss	Participant-initiated posts elicited more responses than research team moderator-initiated posts, suggesting that posts from peers were more engaging
Online synchronous chat group22	AYA cancer survivors (between age 18 and 39)	10-week chat group that compared chat + standard psychoeducation (a workbook) v chat + clips from an AYA-created film on group process outcomes (eg, cohesiveness)	Online synchronous chat group focused on sharing feelings and building connections, moderated by a therapist	Online synchronous group with the peer-created video was perceived as more suitable, cohesive, and having a higher level of important group processes compared with psychoeducation	Peer-created video may have contributed to emotional processing; lower than expected weekly attendance in both chatgroups (<75% attended each week)
Oral Chemotherapy Adherence TikToks23	AYAs with acute lymphoblastic leukemia who were prescribed an oral maintenance chemotherapy	Develop and disseminate psychoeducation about medication taking for AYA with cancer that provided empirically supported strategies for fostering adherence	AYAs, including influencers, helped cocreate and codisseminate TikTok content, disseminated across various platforms (Facebook, Instagram, TikTok)	Across platforms, the TikTok’s received 30,797 impressions (views) and 1,433 engagements (likes, comments, shares). Comments on AYAs’ personal TikTok pages implied engagement from AYAs with cancer	Did not assess whether viewers were predominantly AYAs with cancer or if those views/engagements affected medication adherence

Abbreviations: AYA, adolescents and young adult; YA, young adults.

A NEW CARE DELIVERY MODEL: PARTNERSHIPS WITH SOCIAL MEDIA INFLUENCERS

Social media influencers are microcelebrities on platforms such as Instagram or TikTok who cultivate large audiences with similar interests/experiences and act as opinion leaders. Some influencers earn income via product endorsements, though this is not always the case within AYA cancer communities. While we use the term influencer here, it is important to note that our CAB conceptualizes their roles as digital cancer advocates who are distinct from influencers who focus on selling products. In this manner, we draw similarities between influencers in AYA digital communities and community-based partners in more traditionally defined communities (eg, peer navigators).

There is strong marketing evidence that influencers affect consumer engagement, intentions, and behaviors, particularly when the influencer is perceived as authentic.²⁴ Leveraging influencer partnerships to affect health behaviors is a relatively nascent but promising field. An influencer-driven campaign resulted in significant increases in positive beliefs and attitudes about the flu vaccine.²⁵ Anecdotally, our partners hear that their social media communities foster a sense of belonging and well-being among AYAs.

When influencers are carefully vetted and authentically engaged as partners throughout the lifespan of research, clinical, or public health cancer initiatives, we propose that this offers a novel method for supporting cancer care with health equity implications for AYAs. To demonstrate, we describe the potential benefits of this partnership model through the ConNECT Framework.¹¹ ConNECT comprises five synergistic and broad recommendations for achieving health equity: (1) integrate context, (2) foster a norm of inclusion, (3) ensure equitable diffusion of innovations, (4) harness communication technologies, and (5) prioritize specialized training. We focus on the first four recommendations, with practical examples of potential social media approaches for affecting AYA cancer care discussed below and in Figure 1.

PARTNERING WITH INFLUENCERS TO ENHANCE THE CONTEXTUAL RELEVANCE OF HEALTH INITIATIVES

The ConNECT framework calls for greater emphasis on the social and contextual influences that relate to health. Fundamentally, AYA cancer social media influencers are context experts. They are patients with lived cancer experiences who have navigated social and contextual barriers to care. Since influencers often use their own image in social media messages, their identity and their cancer experiences can represent diverse sociodemographic backgrounds that are rarely captured in cancer communication strategies/interventions (eg, sexual and gender minority AYAs). Moreover, patient narratives serve as an important source for health information because of the ability to model desired health behaviors (eg, taking an oral chemotherapy, engaging in stress management) and challenge subjective norms (eg, healthy as the AYA norm), through a relatable source. Influencers also offer AYAs, who often feel ostracized or stigmatized on the basis of their cancer and other intersecting identities, access to companionship, and emotional validation that are otherwise harder or impossible to access. Together, by partnering with influencers, there is the possibility to enhance the contextual relevance of cancer messages through the eyes of an influencer who has real-world cancer experiences and visible identities, values, and behaviors that are similar or relatable to subgroups of AYAs.

PARTNERING WITH INFLUENCERS TO PROMOTE INCLUSIVE PARTICIPATION

The next ConNECT principle calls for more intentionally inclusive efforts in research (ie, including the most representative sample as possible). This can include strategies such as targeted outreach, tailored recruitment strategies, and use of participatory research methods to establish community partnerships. Influencers present unique opportunities for using their large, established networks to recruit AYAs and spread cancer information at the population level. As influencers share content on social media platforms widely used by AYAs, followers may access their content for free regardless of their device type, geographic location, or what type of setting they receive their cancer care. Indeed, social media rarely requires AYAs to adopt something new or even use social media more frequently; cancer-related messages appear on social media platforms that AYAs already frequently use and/or via the influencer accounts they already follow. Thus, partnering with influencers has relevance for health equity by providing potential opportunities for recruiting and engaging a broader population, including AYAs who have been described as difficult to reach with traditional methods (eg, hospital-based recruitment). This application is particularly relevant for addressing the disparity of lower AYA recruitment and retention in cancer clinical trials. Influencers established networks could enable broader reach of information about clinical trials to AYAs, including those treated in community settings and/or Black or Hispanic AYAs who have even lower clinical trial representation.

PARTNERING WITH INFLUENCERS FOR EQUITABLE DISSEMINATION

ConNECT’s third principle focuses on ensuring that diverse groups equitably benefit from scientific and clinical advances. Establishing relationships with prominent community leaders who endorse and are enthusiastic about a health recommendation/intervention is a proven dissemination strategy for enhancing health equity. To ensure equitable access to cancer information and resources among AYAs online, we propose that influencers on social media must also be engaged as community partners. Influencer partnerships can help ensure broad outreach using highly accessible, developmentally tailored communication strategies that do not require high health literacy. As an applied example for addressing AYA cancer disparities, an influencer partnership may be used as a dissemination strategy for widely delivering high-quality reproductive and sexual health care information to AYAs (a topic that is under-addressed within health care settings) to improve knowledge and convey support.

PARTNERING WITH INFLUENCERS TO HARNESS HEALTH COMMUNICATION TECHNOLOGY

The fourth Connect principle recognizes the promise of using technology in health equity efforts to increase access, which is inherent to this partnership model that leverages an existing digital community for supporting cancer care. For example, take the disparity of suboptimal AYA engagement in lifelong, annual risk-based survivorship care. An influencer-driven social media about why follow-up care is important and how to navigate barriers (eg, finding a clinic, knowledge gaps) may be more likely to reach and empower AYAs than relying on them to seek out information or adopt a new digital tool (eg, a survivor-focused app, a hospital patient portal) when they are disengaged from care. Given the rapid pace of technological change, an added benefit is that influencers are nimble and able to adapt message forms and characteristics that are popular at the time (eg, trending memes), increasing the likelihood that AYAs will attend to health messages.

A CALL TO ACTION: ESTABLISH INFLUENCER PARTNERSHIPS

Community engagement transforms how knowledge is prioritized, translated, and used in real-world settings, thus representing an important step toward mitigating AYA cancer disparities via digital health. We hope to inspire partnerships with AYA cancer influencers to address disparities across the cancer care delivery continuum. Our team has been building capacity with influencers to prepare to address AYA cancer disparities via codesigned and codeployed social media campaigns (see supplementary document for practical recommendations for identifying, screening, and building partnerships with influencers). The CAB is diverse in terms of age, race, ethnicity, gender identity, their creative approaches to social media content, and reach. After conducting listening sessions with the Influencer CAB, and as part of our call to action, we conceptualize influencer partnerships as community-based partnerships. This requires adopting participatory approaches that engage community members as equal partners. For instance, providing influencers with appropriate credit/recognition for their efforts (eg, an agreed-on monetary rate, credit with coauthored publications/presentations, not using their content without permission), and power sharing (eg, shared and inclusive decision making in defining, executing, and evaluating a project).

In conclusion, social media and the influencers therein represent a current cancer information ecosystem and digital community for AYAs. AYAs are sharing and seeking cancer information via social media–with or without health expert input–though large-scale campaigns for addressing AYA cancer disparities are lacking. We recognize that there are many unanswered and important topics to address related to this topic, including generating empirical evidence of the impact of influencer messages on cancer perceptions and behaviors, and identifying the subgroups of AYAs and their supporters who engage with and benefit from influencers the most to ensure that strategies are equitable. As an initial step, we aim to stimulate cancer researchers, clinicians, and agencies to recognize these influencers, rather than ignore them, as potential partners and digital peer navigators that have the potential to support cancer care delivery and improve cancer outcome disparities from the ground up.