International Journal of Communication 20(2026) Authentic Expertise
University of Leicester, United Kingdom
ESTEBAN MORALES
University of Groningen, The Netherlands
JAIGRIS HODSON
Royal Roads University, Canada
In the online cancer community, influencers have become powerful sources of information, advice, and community for their followers, many of whom are struggling with cancer themselves. Unfortunately, these actors are also in a strong position to propagate dangerous misinformation that jeopardizes their followers’ health unwittingly. In this article, we draw from 12 semistructured, in-depth interviews with influencers in the online cancer community about their experiences navigating cancer misinformation on social media. Findings show that influencers attempt to avoid spreading misinformation about the disease in two overlapping ways: (1) by couching their content production in the discourse of personal experience and (2) through periodic performances of transparency and fallibility. Taken together, these strategies represent the ascent of what we call “authentic expertise,” a hyper-individualized form of expertise cultivated and performed through the enactment of personal truths and imperfection. We argue that authenticity may operate as an important narrative device that shields influencers from the consequences of spreading inaccurate information. Implications for theory and practical efforts to address misinformation are discussed.
Keywords: authenticity, misinformation, influencers, social media, cancer communication
Victoria O’Meara: [email protected]
Esteban Morales: [email protected]
Jaigris Hodson: [email protected]
Date submitted: 2024-04-03
The ascent of social media influencers has significantly changed the information landscape in the digital media era. Influencers represent an emergent category of cultural producers native to digital media environments. These are prolific social media content creators who, because of their regular posting and ongoing interactivity with fans, have gained a loyal, engaged, and often sizeable online following. Influencers have become powerful voices and trusted sources of information for the online audiences they cultivate. Furthermore, in an online information ecosystem that rewards popularity and user engagement with increased visibility, these actors can be powerful agents in the circulation of health information to online publics more broadly (Engel, Gell, Heiss, & Karsay, 2024).
However, despite their significant role in the current information ecosystem, influencers tend to operate outside the checks and balances that more traditional media industry practitioners are beholden to. Journalists, for example, are obliged to act within the boundaries of professional standards, regulations, oversight mechanisms, and a duty to the public, alongside professional training, resources, and support with fact-checking to help ensure that they communicate information accurately and completely. Influencers, however, operate with very few or none of these instruments in place. Many are amateurs working independently, without the training or support needed to fact-check and verify information (Mulcahy, Barnes, de Villiers Scheepers, Kay, & List, 2024). There is no accreditation process limiting entry into the field, nor any robust regulation or oversight body to curtail influencers’ role in spreading rumors, inaccuracies, and misinterpretations—intentional or otherwise. In the social media economy of visibility, an influencer’s priority is to provide fans and followers with interesting content; accuracy, evidence, and completeness are not rewarded in the same way. As such, influencers’ content production represents an altogether different relationship with truth than that of journalists—one grounded in authenticity rather than facticity. In a context where online influencers sometimes boast audience shares that rival traditional media outlets, this has significant implications for the health and functioning of digital publics.
The implications of these shifts in the media landscape are particularly stark in the online cancer community, where discussions on cancer science, causes, and treatments abound. In this space, inaccurate, incomplete, or misleading content about cancer posted by influential and highly visible content creators can have dangerous consequences in the lives of online audiences (Driscoll, 2019). With these stakes in mind, how do cancer community influencers conceptualize this problem and negotiate its associated challenges and responsibilities? This article seeks to explore this question.
In what follows, we begin by grounding the current study in the relevant literature on cancer misinformation on social media and the performative practice of authenticity that shapes influencer cultures. We then provide an overview of our methods before presenting the study’s findings, which show that cancer influencers operationalize authenticity to negotiate the dangers of cancer misinformation in two key ways—by framing their online communication about cancer through the lens of “personal experience” and by performing transparency, fallibility, and self-reflexivity to maintain trust. Taken together, these strategies represent the ascent of what we call “authentic expertise,” a hyper-individualized form of expertise cultivated and performed through the enactment of personal truths and imperfections. In the Discussion section, we argue that authentic self-performance operates as an important narrative device that grants all expressions validity and shields speakers from the consequences of spreading misinformation. Broader theoretical and practical implications of these findings for understanding and addressing misinformation are considered.
Literature Review
Cancer Health and Misinformation on Social Media
In recent years, misinformation, defined as “information that is false, inaccurate or misleading” (Loeb, Langford, Bragg, Sherman, & Chan, 2024, p. 455), has been identified as a significant social issue. The World Economic Forum (2024) recently described it as a global risk and one of the main threats that contemporary society faces. From political disinformation campaigns seeking to manipulate democratic processes (Bradshaw & Howard, 2018) and financially driven click-bait content designed to provoke outrage (Braun & Eklund, 2019), to AI deepfakes that attribute words and actions to people who never held them (Visozo, Vaz-Álvarez, & López-García, 2021), misinformation has become a cause for concern in various contexts and locales. Arguably, nowhere is this clearer than in the world of health misinformation on social media, where falsehoods and those who profit from them have convinced people to take dangerous actions that jeopardize their health (Coleman, 2020; Petrie, 2023).
A critical example of the scale and impact of health misinformation is found in the realm of cancer communication. For cancer patients, their caregivers, and loved ones, social media is an important resource for information seeking, self-expression, community, comradery, and support (Braun, Zomorodbakhsch, Keinki, & Huebner, 2019; Gage-Bouchard, LaValley, Mollica, & Beaupin, 2017; Hodson & O’Meara, 2023; Kroenke et al., 2013; Lazard et al., 2021; Warner et al., 2020). Oncology professionals also recognize the benefits of communicating important medical information (Morgan et al., 2021) and strengthening the patient-physician relationship (Gentile, Markham, & Eaton, 2018).
However, misinformation about cancer science, the causes of the disease, and courses of treatment is pervasive on social media (Johnson et al., 2022). Here, manifestations of misinformation, such as incomplete information, misunderstandings, and deliberate misreadings of cancer science and effective treatments, abound, sometimes with deadly consequences (Driscoll, 2019).
Cancer misinformation happens for several reasons. Unfortunately, the economies of attention that platforms foster are ripe for exploitation by snake-oil salespeople who capitalize on people’s hope for a cure for their own economic gain (Szeto, Cowley, & Common, 2023). Furthermore, the structures and operational interfaces of these spaces do not lend themselves to thoughtful consideration and in-depth analysis. Rather, they are designed to facilitate speed and virality, which are often at odds with the nuance and complexity required to communicate scientific information (Dahlstrom, 2021). For instance, recent work on health information on TikTok has found that popular health videos rarely include citations to verifiable sources (O’Sullivan, Nason, Manecksha, & O’Kelly, 2022). It is this challenging context of dubious credibility and unverified information that cancer patients, their loved ones, and cancer information-seekers contend with daily.
Authenticity as an Organizing Principle and Performative Practice on Social Media
As online misinformation proliferates, authenticity has surged to the foreground of popular consciousness, becoming an organizing principle and a central value of digital publics. In a social context where participation in media production and information circulation processes has become widespread, the stability of shared frames of reference has been profoundly shaken. This is a development that some have conceptualized as “information disorder” (Wardle & Derakhshan, 2017), where emergent sociotechnical affordances and practices disrupt our shared information ecosystems. In this setting, authenticity emerges as an alternative post from which to approach truth, proffering a deeply personal and individualized form of it. Indeed, as others have noted, the ethic of authenticity is ultimately steeped in the logic of remaining “true to oneself” (Taylor, 1992, p. 29).
In participatory media environments, which allow for the ongoing performance of selfhood to digitally mediated publics, authenticity is frequently defined as the external performance of some internal truth (Haimson, Liu, Zhang, & Corvite, 2021; Kreling, Meier, & Reinecke, 2022). This performance of the true self is not a static representation, but changes based on the social environment (Wang & Skovira, 2017), using the specific affordances of different platforms and responding to feedback from online audiences (Kreling et al., 2022). In this study, however, we expand on this conceptualization. We propose that authenticity is not merely a popular self-representation strategy enabled by the participatory possibilities of digital media technology. We further conceptualize authenticity as a governing logic that emerges from and responds to how collective frames of reference for truth and reality are destabilized by this shift toward mass participation in media production. In short, authenticity is one way that digital publics, both performers and audiences, can experience a sense of truth.
While authenticity may provide access to experiencing truth, this does not mean that it stands in opposition to misinformation. Authenticity, in this social media era, is a fundamentally performative practice. It is a way of presenting oneself as believable, trustworthy, and judged as honest—whether through passionate, uncensored discourse or unapologetic transparency (Audrezet, De Kerviler, & Moulard, 2020). It is the perception that one has aligned one’s internal sense of being with one’s external presentation of the self: the coherence and unification of one’s beliefs and actions and presenting oneself to others as naturally as possible (Arriagada & Bishop, 2021). In this sense, the performance of authenticity involves what Dubrofsky and Ryalls (2014) call “performing-not-performing,” performing as if no performance is involved, as if one is simply being.
Authenticity is a fundamentally relational construct, coproduced in a complex dynamic between the performer and the audience. On the one hand, authenticity cannot exist without the audience, without external auditors to view and evaluate the performance and bestow the category of authenticity on it (Banet-Weiser, 2012). On the other hand, authenticity also requires the negation of that audience, acting as if they do not matter to convey that they have no impact on the performance of being (Burton et al., 2023). In short, to be judged authentic, one must be presumed to behave the same way, with or without spectators. As such, telling truths is not a requirement for being authentic—rather, what matters most is the impression of being true to oneself.
In many ways, it is perhaps not surprising that authenticity has taken up a place of significant import at the current juncture. The social media economy is structured around the principle of authenticity, which is at the core of social media advertising models (Shoenberger, Kim, & Johnson, 2020; van Nuenen, 2019). These spaces necessitate that users participate and engage in ways that reveal key insights about themselves, which are captured as data and used to target them with advertising. In many ways, authentic self-representation is crucial to the continued success of many platform enterprises that rely on valid (i.e., true) user data to create revenue streams and build new products (O’Meara, 2023).
With this data-driven economic model as its backdrop, social media structures and cultures enable new forms of public visibility and social surveillance, incentivizing people to curate and perform their selfhood for an online audience (Hearn, 2008, 2017). In such a context, being able to cultivate an aura of authenticity around one’s performance has gained significant cultural cache. In a context where anyone can publish anything, the rallying cry becomes for people to behave “authentically,” to be honest, transparent, and “real.” No figure represents this cultural ethos more vividly than the influencer.
Influencers, Trust, and Authenticity in Online Communities
Influencers are social media content creators whose online self-presentation and social interactions garner them an online audience and reputation as opinion leaders within their content production niche. In the digital media era, these individual producers operate as mini media empires, running social media news and entertainment businesses, sometimes with audience sizes that rival traditional media outlets. Although definitions of influencers tend to emphasize the commercial underpinnings of this figure (Abidin, 2015), for this study, we adopt a more generalized definition of influencers: popular social media content creators who engage in the performative practices of microcelebrity (Marwick, 2015) and command the attention of an online audience. These actors are important nodes around which other social media users gather to consume information and entertainment and to converse with others interested in similar topics.
These digital content creators are expert practitioners of the authentic. Indeed, their authenticity is a key discursive mechanism that differentiates their content production activities as more “honest” and “real” than the polished outputs of the traditional media and cultural industries (Cunningham & Craig, 2017; Marwick, 2013). That influencers are typically viewed as self-trained amateurs who have attained their popularity and micro-celebrity status outside of the notoriously inaccessible machinations of traditional media industries lends credence to the idea that these media producers are more “real” than their media industries counterparts (Duffy, 2015; Duffy & Hund, 2019), whose autonomy and honesty are ostensibly curbed by external pressures.
As expert practitioners of the authentic, influencers deserve sustained scholarly attention in misinformation studies. They are important actors in the social media information ecosystem, whose online visibility, authoritative voice, and popularity give them significant power to exacerbate or help curb the spread of misinformation and its associated dangers (Lutkenhaus, Jansz, & Bouman, 2019; Thompson, 2022). The role that these actors can play as informal educators has been recognized and conceptualized as “influencer pedagogy,” a term referring to the “indirect, mediated processes of education produced through relatable interactions between influencers and their followers on social media platforms” (Hendry, Hartung, & Welch, 2022, p. 428). In their role as informal public educators, they can reach large audiences with messages that resonate, potentially influencing health behaviors (Lutkenhaus et al., 2019). Indeed, research suggests that people follow cancer influencers to better cope emotionally with their health condition, gain relevant information, and find motivation to engage in health-promoting behaviors (Heiss & Rudolph, 2023). They can model patterns similar to those of key members of a person’s social network, passing on norms and expectations to others and acting as “role models” for behavior (Heiss & Rudolph, 2023, p. 807). However, they can also play a central role in spreading dubious science, medical inaccuracies, and, in some instances, outright falsehoods, as nonmedical professionals share information with online followings that trust and respect them (Li, Cheung, Shen, & Lee, 2019; Marocolo et al., 2021).
Filling the Gap
The performative practice of authenticity is central to what makes the influencer and their speech feel real, honest, trustworthy, and believable. As such, it can be a powerful mechanism by which cancer misinformation spreads and takes hold. While studies show that influencers are implicated in health misinformation sharing (Marocolo et al., 2021) and that they can act as powerful vectors through which misinformation spreads online (DeVerna, Aiyappa, Pachico, Bryden, & Menczer, 2024; Li et al., 2019), little research to date explores how influencers consider misinformation in the context of their self-performance and how they conceptualize their own roles and responsibilities in relation to it. Furthermore, while authenticity has been identified as a key performative principle of influencer cultures and economies (Cunningham & Craig, 2017; Duffy, 2017; Marwick, 2013), one that imbues their speech with the “gloss” of truth (Burton et al., 2023), little work has examined the impact that this normative performative practice has on how notions of truth and falsehood are delineated and understood by these skilled practitioners of “the authentic.” This study contributes to filling these gaps. We ask: How does misinformation inform cancer influencers’ performance of authenticity, and how does authenticity inform their relationship to misinformation?
Method
To explore our research question, we conducted a qualitative interview study of social media influencers in the online cancer community. We defined “cancer community influencers” as social media users who regularly post cancer-related content, interact with their online audience by responding to comments and answering questions, and have more than 1,000 followers. This number was chosen to ensure that participating influencers created content for an audience that extended beyond their personal network of family and friends.
We identified relevant influencers through hashtag searches on Instagram, TikTok, and YouTube. Some examples of hashtags searched include #cancer, #cancerdiagnosis, #cancerfighter, and #cancerjourney. We also invited popular cancer influencers known to one of the authors through preexisting relationships, which had been cultivated through their experience seeking community and information about cancer. In total, a list of 48 influencers was compiled, and each was invited to participate in the study. Twelve influencers accepted the invitation. Eleven self-identified as women and one as a man. They had online audiences that ranged between 1,600 and 170,000 followers and were located in Canada, the United States, England, and Australia.
Semistructured, in-depth interviews of approximately one hour were conducted, focusing on three overarching subject areas: (1) participants’ experiences seeking and building online communities among cancer survivors and caregivers, (2) their perceptions of and experiences with online abuse in these communities, and (3) their perceptions of and experiences with misinformation in their work as influencers in this space. This study draws primarily from responses to the following questions from the interview guide: (1) Do you worry about spreading misinformation about cancer? and (2) How do you avoid spreading misinformation about cancer?
The interview data underwent qualitative thematic coding, and the data analysis process was guided by a grounded theory approach (Glaser & Strauss, 1999). All interviewees were assigned pseudonyms to protect their anonymity in the presentation of the findings.
Findings
Findings show that influencers use authenticity to negotiate the dangers of spreading cancer misinformation in their own content in two overlapping and mutually reinforcing ways. In the first, they frequently framed their content production practices as “personal experience” to neutralize the threat of posting inaccurate or misleading information about cancer. In the second, they emphasized honesty and transparency, admitting mistakes and reminding their audience of their human fallibility or nonexpert status. We discuss each strategy below.
Keeping Things Personal
When asked how they avoided accidentally spreading misinformation about cancer, cancer influencers frequently said they focused their content largely on their own “personal experiences.” These personal experiences covered several topics, including their relationships and social life, behind-the-scenes content about appointments and treatments, the physical impact of their experience, commentary on their emotional state, and accounts of their victories and setbacks.
Prioritizing personal experience emerged as a key strategy for reducing the risk of contributing to misunderstandings about cancer. Indeed, some participants repeatedly underscored that because their posts were oriented around their personal experiences, they could not misinform others. Kelly’s comments are representative of this sentiment. She explained, “A lot of my videos are just from personal experience. So, it can’t be a misconception if that’s what I personally experienced.” For Kelly, sharing personal experiences and spreading misinformation are incompatible phenomena. She explained that while she would hate to say something incorrect and damage her credibility in the community, the responsibility for accuracy did not weigh heavily on her.
Interviewer: Is it a lot of responsibility?
Interviewee: Not necessarily, because I don’t make a lot of factual information videos because that’s not really my niche. [. . .] I just joke about my personal experience. And I don’t think you can do any wrong when it’s your own experience.
For Kelly, staying focused on her own lived experience eliminates the possibility that she might contribute to misunderstandings about cancer, cancer science, its causes, and treatments. Pat maintained a similar view. He explained that he did not worry too much about the possibility of spreading misinformation because his content remained focused on his experience and mindset:
My videos don’t really have to do with what you are going to do during chemo, what to take, or what to do. My main focus is just talking about everything I’ve been through and how I’ve used my mindset to stay okay through it. [. . .] So, there’s little that anyone can say about that. I don’t really think I’ve spread any misinformation, because I’m pretty much telling my story, from my point of view. I know it the best. So, I don’t think anyone can discredit me on that.
For Kelly and Pat, personal truths about the cancer experience need not intersect with general truths and shared facts about the disease. They couched their posts firmly around the former, aiming to avoid missteps with the latter.
Others, however, expressed concern about the challenges of remaining accurate when communicating about their cancer experiences. Steph, for example, described an experience where she had shared information about childhood cancer on Instagram that turned out to be untrue. “I had less followers then, but it did teach me an important lesson that I need to be careful.” To avoid these kinds of mistakes, Steph now reaches out to oncologists in her network or reviews trusted websites to verify information before discussing it on social media. Nevertheless, beyond these strategies, she also described a “personal experience” communication style to avoid potential misunderstandings:
I have to evaluate based on websites and sources that I trust. And then a lot of times too, I just speak from my experience, because my experience is my experience. And it’s validated by me living it. So, I don’t try to do anything fancy or give people medical advice or psychological advice.
Like Kelly and Pat, personal experience for Steph is a communicative device that allows her to sidestep the complexity of cancer science and, with it, the potential for misleading others about the disease.
However, the boundary that these interviewees draw between personal experiences with cancer and information about cancer is perhaps more porous than their comments suggest. Ashley’s explanation, for instance, walks the line between sharing a personal journey and providing information. She explained that she uses Google search to fact-check, much like Steph. However, she also described a strategy of avoiding misinformation about cancer by focusing on her own experiences: “For the most part, I’m sharing my experiences. So, I’m not sharing health facts, or statistics or anything like that. I’m sharing what has happened to me on my journey.” However, she also noted that her experience had equipped her with experiential knowledge that she openly shared with her followers in a practice she referred to as “staying in her lane”:
When it comes to infections, you can ask. Like pick one. I’ve been on every antibiotic under the sun, I’ve had renal failure. When I say I’ve been through it, I’ve been through it! And all I can do is speak on that. My blood transfusions, my PICC lines, my home health care. That kind of stuff. Just so I don’t spread misinformation. I think if you stay in your lane, and you just talk about what you know, then you’ll be more safe.
Although Ashley’s comments suggest that a fair bit of information is shared with her followers about cancer, the personal is understood as separate from the factual or informative. In her view, as long as she speaks from this space of personal experience or personal truth, she’s “safe” from the arena of misinformation.
I was getting comments [such as], “Can you share how you found out and [what] your symptoms [were]?” I just had the one symptom. It was very isolated. I had a lump. So, when I was posting that response video, I made sure to do research into the different types of symptoms that there can be because I didn’t want to post that video and then for somebody to see it and think, “Okay, well I haven’t got any lumps. So that’s fine.” But actually, they could be presenting with other symptoms.
For each of these interviewees, the focus on their personal experiences was evoked as a helpful safeguard against the possibility of misinforming. By keeping things personal, they shield against the possibility of being misinterpreted or unintentionally misleading others.
I’m Not Your Doctor: Transparency and Fallibility
The second way cancer influencers sought to avoid spreading misinformation about cancer was by being transparent about their nonexpert status and/or their fallibility as humans who make mistakes. These were common communicative strategies used to distance themselves from the possibility of spreading misinformation. Ashley, for instance, reminds her followers that she is not a medical professional. She explained,
I’ve just realized recently how seriously people are taking my posts, so I’m just glad that I am super transparent, and all of my stuff is true to my experience. But I do give disclaimers like “I’m not a doctor. I just poorly play one on Instagram sometime by putting glasses on.”
Ashley recognizes that her role as an influencer in this community means that she is a trusted opinion leader and that her words have resonance. To counteract her followers’ tendency to “take her posts seriously,” she provides periodic reminders that she is not a doctor or cancer scientist. Beyond using the lens of personal experience to define the truth of her content, she also aims to be “super transparent” about her nonexpertise. This was a strategy that Taylor also employed when her followers’ questions became too specific, something that she told us happened “quite often.” She explained, “I’m not a doctor. I’ll sometimes have to—not in a rude way—but I will have to reiterate to someone, “please don’t ask me. Go and ask your doctor.”
Taylor tells her followers that they should educate themselves on cancer-related issues and not adopt an influencer’s posts, opinions, and experiences as gospel. At one point in our conversation, she began to reflect on the causes of her cancer, which she attributed, at least partially, to birth control pills. She openly discusses this theory with her followers and cautions them about the risks of taking the pill. However, because she does not claim to be a scientific expert, she couches these warnings in a directive to her followers to “do their own research” and draw their own conclusions about the pill as a risk factor for cancer. She also explained her process for verifying information and communicating effectively about this topic.
I guess I do my research. I don’t think I’d ever share something without backing it up. I wouldn’t just come out with some mad statement without sort of fact-checking it because that’s just not how I operate. It’s not what I do. So yeah, obviously, I can have my opinion on stuff. Like the pill stuff, as I said, it’s not super factual, other than they say the pill can be a risk factor. I can voice my opinion, but I’ve always said, when I share stuff like that, “Do your own research and take the pill at your risk.” [. . .] I wouldn’t tell a stranger or anyone to not do something. I’ll just sort of say, “do your own research and then make your own opinion on that.”
To avoid being accused of spreading inaccuracies, Taylor reminds her audience that she is not a doctor and underscores their responsibility to educate themselves and make their own decisions.
Even for those with medical training and advanced degrees, these periodic reminders that they are not a sound source of medical advice are used to stave off crucial misunderstandings. This is the case for Blake, who is a medical professional. She explained that a common strategy her peers use is to preface and end any video they post online with a standard caution: “Many of my colleagues will always be like, ‘I’m not your doctor. I’m presenting this for informational purposes [and] entertainment purposes.’”
In addition to publicly admitting nonexpert status or reminding followers to seek proper medical attention, transparency was also practiced by admitting one’s fallibility. Morgan, for instance, described her approach of admitting mistakes quickly. She explained what she would do if she found out she had posted something incorrectly:
If I did, if I learned that it was [false], I would definitely try to correct myself. We’re all human, we all make mistakes, we’re all wrong a lot. For sure. It’s never below me to admit if I’ve shared something incorrect. I would definitely try to fix that as soon as possible.
Alex’s approach was similar. She works in medicine and regularly speaks publicly about cancer science. She feels acutely aware of the risk of getting something wrong. Part of her efforts to avoid this is to be honest about any knowledge gaps: “If there’s something I don’t know, I’ll say I don’t know.” Nevertheless, even as a trained professional, mistakes are easily made:
It’s very easy [to say something incorrect]. Especially with a podcast. You get carried away. You said it at the time and then, oh my goodness, this is suddenly bad [science]. At least I have control over what I’m putting out [when posting on my own social media]. But it’s much harder when I’m doing interviews, because your tongue is much looser when you’re chatting.
To mitigate damage, Alex, like Morgan, tries to be forthcoming about her mistakes. She relayed an experience she had of creating content in response to what she thought was cancer misinformation circulating on social media:
I did a video saying, “This is ridiculous. It’s not true. It’s not true. It’s not true.” And then a study came out by a woman saying, “Well, there may be some evidence.” [. . .] I put a video up the next day saying, “I hadn’t seen this [study] and I might be wrong.”
This is part of her overall approach to communicating about cancer science on social media. She explained,
If I’ve made a mistake, I will come out the next day and say, “This came up and I was wrong. I don’t get it right all the time. I can’t read everything. I’m only human.” So, when I do make mistakes, I’m open and honest, which again, I think helps build the respect from the community.
In both Alex’s and Morgan’s cases, the strategy for avoiding contributing to cancer misinformation is revision. This involves issuing corrections when they mistakenly get something wrong. Interestingly, as Alex describes, her admissions about being incorrect may actually serve to strengthen her status as an authoritative voice in this space, a possibility that we return to consider in more detail in the Discussion.
Discussion: Authentic Expertise
Interviewer: Do you ever worry that you might be the one to spread misinformation about cancer?
Interviewee: No. I mean, because all I can ever do is know that I’m coming from an authentic place.
The above statement came from a conversation with Jordan about her efforts to avoid circulating inaccuracies about cancer. For Jordan, communicating authentically means conveying her sincerely held beliefs and understandings about cancer. In this formulation, speaking honestly about things you believe to be true is morally and functionally equivalent to speaking the truth. Jordan’s comment succinctly summarizes an overarching logic that permeates the strategies discussed with many cancer influencers to negotiate the challenges of communicating accurately about cancer, cancer science, its causes, and treatments in social media environments. These actors have some visibility and acutely feel the potential consequences of getting it wrong. As a result, they employ personal experience, transparency, and fallibility to distance themselves from that possibility. This use of personal experience, reliance on transparency, and acknowledgment of fallibility all amount to what we term “authentic expertise”—a form of expertise cultivated through the performance of one’s authentic selfhood, which confers authority and credibility in digital spaces.
These findings suggest that authentic self-performance serves a key distancing function. It operates as an important narrative device, releasing the speaker from responsibility for dealing in acknowledged facts or shared truths. Personal truths are held out as separate, untethered to communal understandings of what is real. In speaking from this position of personal experience, all expressions gain validity, and obligations to a shared understanding fall away. We now consider each of these features of authentic expertise, in turn.
Making Misinformation Impossible
Cancer science is complex. Even for trained experts, it contains nuances that are difficult to communicate effectively in social media environments, which prioritize speed and virality over depth and comprehensiveness (Conley, Otto, McDonnell, & Tercyak, 2021). To avoid getting it wrong and unintentionally participating in misinformation sharing, the study participants chose to turn inward and reflect on their personal experience when crafting their social media posts. In this way, misinformation dangers shape their performance of authentic selfhood. Here, authenticity is not only a mode of self-conscious self-representation but also an important site of retreat, reprieve, or safe haven from the possibilities of harming others online.
For the participants of this study, remaining in the terrain of personal experience helped shield them from critique or challenge because personal experiences are not subject to criticism and public debate. It is not a terrain on which truth claims can be contested because personal experience is not auditable by external parties. As Pat put it, no one can “discredit me on that.” Through the lens of some study participants, the status of one’s personal experience as a personal truth means that one cannot be accused of misleading or misinforming. Our participants’ personal truth is a mechanism for releasing themselves from the burden of having to know medical or scientific evidence because their personal evidence is all they have.
In this way, authentic selfhood, conceptualized here as the performance of personal truths, seems to render misinformation impossible. Authenticity acts as a form of truth, albeit a deeply individualized one, and as long as one is authentic, the possibility that one would misinform becomes unintelligible. As long as one remains “true to oneself,” narrativizing through the frame of personal experience, one cannot misinform or mislead others.
However, as indicated by Kim’s story about discussing her symptoms, personal narratives are not necessarily devoid of inaccuracies and are not innately counter to misinformation, misunderstandings, and misconstrued facts. In fact, personal anecdotes have proven to be a common and powerful instrument for spreading misinformation (Dahlstrom, 2021; Krishna & Amazeen, 2022; Shelby & Ernst, 2013). This is particularly true about health misinformation, where personal stories of adverse side effects have, for instance, fueled misinformation spread about vaccine science, safety, and efficacy (Parks, 2021). With this in mind, participants’ reliance on personal experience as a bulwark against spreading misinformation is a tactic that may not achieve the stated ends and could ultimately backfire.
Authentic self-performance remains susceptible to misinformation, potentially containing inaccuracies or steering audiences away from established knowledge. The resistance to this idea among some interviewees is troubling for efforts to address cancer misinformation on the ground. If influencers do not see the possibility of contributing to misunderstandings and misconceptions about cancer, they are unlikely to seek out and adopt practices to mitigate the potential to do harm.
Granting All Expression Equal Validity
Couching communication about cancer in narratives of personal experience creates a safe zone protected from external audits. Importantly, personal experience not only shields influencers from critique or correction but also shields them from the potential consequences of propagating false or misleading information about cancer, its causes, and treatment. In speaking “my” truth, I speak only my individualized, internal truth, which serves an individualized, internal function—namely, my personal self-expression. If others draw inferences from that self-expression that ultimately cause them harm, I am not at fault. This is the terrain of “my” truth about cancer, not “the” truth about cancer.
Burton et al. (2023) write that while the performance of authenticity requires an audience, it also requires the negation of that audience to appear authentic. Authenticity is a fundamentally relational construct; to be deemed authentic requires that one be perceived as one by others. However, it also requires that the audience have little effect on the performance of the self, that the speaker would behave the same way with or without spectators. In this study, participants negate the audience when they frame their responses to questions about misinformation as simply telling “my story” or expressing “my opinion.” They attempt to negate the relational aspects of communication, the reality of recipients, and their role in the co-constitution of meaning in the process. In this case, that negation of the audience for one’s speech culminates in a negation of consequences or the impact that this speech could have on the knowledge and actions of others about cancer.
Authenticity, it would seem, is a performance of personal truth that grants all expressions a type of validity. The broader implications of these developments make it more difficult to establish and maintain collective understandings of the world and shared truths.
The Seductive Power of Authentic Expertise
Dubrofsky (2016) argues that transparency and self-reflexivity are deeply entwined with contemporary expressions of authenticity. While the self is produced through selfies, social media updates, and other digital artifacts, the authentic self does not hide or remain obscure regardless of the context (transparent), portraying a self-awareness of this performance (self-reflexive) (Dubrofsky, 2016).
With this in mind, we can consider our interviewees periodically reminding their followers that they are not experts and that they can make mistakes to be an ongoing performance of authenticity. This display of transparency and self-awareness reads as authentic. In this way, the realities of cancer misinformation—and the possibility of being implicated in its spread—become a resource for enacting one’s authenticity within an online community.
The danger is that by admitting that they are not experts, do not know everything, and sometimes get things wrong, they may, as Alex’s comments suggest, strengthen their positions as trusted authority figures on this topic. Indeed, such articulations of transparency and fallibility are a performance of authenticity that ultimately helps participants maintain their credibility, legitimacy, and expertise in this space (Tolson, 2010). Nevertheless, as we have previously articulated, the performativity of authenticity is in itself not an act of truth-telling (Burton et al., 2023). Indeed, sharing misinformation—even when proven to have done so—does not necessarily remove or diminish the perceived authenticity of the speakers. As exemplified by the controversies surrounding deliberate lies from Donald Trump, breaking the rules is often perceived as the ultimate evidence that one is being “real” with others (Chun, 2021).
Conclusion
In this study, we sought to explore the intersections, tensions, and contradictions between authenticity and misinformation among influencers in the online cancer community. Drawing from a series of semistructured interviews with cancer influencers, we ask: How does misinformation inform influencers’ performance of authenticity, and how does authenticity shape their relationship with misinformation? Findings show that influencers employ two key strategies of authentic self-performance to distance themselves from misinformation and the possibility of spreading it, namely, personal experience and transparency. The current study showcases how authenticity offers a deeply individualized form of truth that grants all expressions a type of validity. In effect, it shields the speaker from responsibility for accuracy and, as a result, the consequences of misinformation.
This project begs the question: Does the emphasis on personal experience, transparency about one’s nonexpert status, and admissions of fallibility actually serve to reinforce credibility, authority, and trustworthiness? Our findings center on the need to critically question the accountability of authentic expertise concerning health misinformation. In a context where influencers are bound between commerciality and authenticity (Arriagada & Bishop, 2021), it is increasingly important to balance the appeal of health influencers’ personal stories and the negative consequences of spreading incomplete or incorrect information. Here, we argue that any effort to widely disseminate scientifically validated information must consider the source in determining how information is authenticated. As platforms and governments aim to address misinformation—especially health misinformation—from circulating in online environments, our study argues that we need to better grapple with the role of personal narratives in dealing with this problem. Facts are important, but they are not necessarily sufficient for how audiences consume information and evaluate truth claims.
This study is not without limitations. The project was designed to enable in-depth qualitative analysis, so the sample size was limited to a group of 12 participants. Participants were primarily women (11 out of 12), and all were from English-speaking countries, including Canada, the United States, the United Kingdom, and Australia. Therefore, these findings are not generalizable to broader populations of cancer community influencers across diverse gender identities and cannot speak to the realities of how authenticity may be used to navigate cancer misinformation in diverse national, geographic, and cultural contexts. Future work should examine how different contexts and diverse populations nuance this study’s findings.
In this context, we outline possible future lines of research that allow scholars, policy makers, and platforms to better deal with the ascent of authentic expertise as an authoritative subject position. First, future research should examine how authenticity displays affect audiences’ perceptions of truth. Second, future work should examine how authenticity is operationalized to avoid responsibility for misinformation in other communities and sites of cultural production. Moving forward, we recommend that public health communicators also consider the findings of this research by working with small online cancer influencers to spread health messaging. Our participants told us that they did not wish to spread misinformation and would correct themselves or try to source accurate sources of health advice wherever possible. This represents an important opportunity for health communicators to provide influencers with the tools needed to advise others without relying on the personal experience heuristic, which can sometimes lead to incorrect conclusions.
References
Abidin, C. (2015). Communicative ❤ intimacies: Influencers and perceived interconnectedness. Ada: A Journal of Gender, New Media & Technology, 8, 1–16. https://doi.org/10.7264/N3MW2FFG
Arriagada, A., & Bishop, S. (2021). Between commerciality and authenticity: The imaginary of social media influencers in the platform economy. Communication, Culture and Critique, 14(4), 568–586. https://doi.org/10.1093/ccc/tcab050
Audrezet, A., De Kerviler, G., & Moulard, J. G. (2020). Authenticity under threat: When social media influencers need to go beyond self-presentation. Journal of Business Research, 117, 557–569. https://doi.org/10.1016/j.jbusres.2018.07.008
Banet-Wiser, S. (2012). Authentic: The politics of ambivalence in brand culture. New York: NYU Press
Bradshaw, S., & Howard, P. N. (2018). The global organization of social media disinformation campaigns. Journal of International Affairs, 71(1.5), 23–32. Retrieved from https://www.jstor.org/stable/26508115
Braun, J. A., & Eklund, J. L. (2019). Fake news, real money: Ad-tech platforms, profit-driven hoaxes, and the business of journalism. Digital Journalism, 7(1), 1–21. https://doi.org/10.1080/21670811.2018.1556314
Braun, L. A., Zomorodbakhsch, B., Keinki, C., & Huebner, J. (2019). Information needs, communication and usage of social media by cancer patients and their relatives. Journal of Cancer Research and Clinical Oncology, 145(7), 1865–1875. https://doi.org/10.1007/s00432-019-02929-9
Burton, A. G., Chun, W. H. K., Bounegru, L., Devries, M., Harris, A., Holtzclaw, H., . . . Weltevrede, E. (2023). Algorithmic authenticity: An overview. Luneburg, Germany: Meson Press.
Chun, W. H. K. (2021). Discriminating data: Correlation, neighborhoods, and the new politics of recognition. Cambridge, MA: MIT Press.
Coleman, A. (2020, August 12). “Hundreds dead” because of COVID-19 misinformation. BBC News. Retrieved from https://www.bbc.co.uk/news/world-53755067
Conley, C. C., Otto, A. K., McDonnell, G. A., & Tercyak, K. P. (2021). Multiple approaches to enhancing cancer communication in the next decade: Translating research into practice and policy. Translational Behavioral Medicine, 11(11), 2018–2032. doi:10.1093/tbm/ibab089
Cunningham, S., & Craig, D. (2017). Being “really real” on YouTube: Authenticity, community, and brand culture in social media entertainment. Media International Australia, 164(1), 71–81. https://doi.org/10.1177/1329878X17709098
Dahlstrom, M. A. (2021). The narrative truth about scientific misinformation. Proceedings of the National Academy of Sciences, 118(15), 1–8. https://doi.org/10.1073/pnas.1914085117
DeVerna, M. R., Aiyappa, R., Pachico, D., Bryden, J., & Menczer, F. (2024). Identifying and characterizing superspreaders of low credibility content on Twitter. cs.SI. https://doi.org/10.48550/arXiv.2207.09524
Driscoll, M. (2019, June 13). A young mother dies after refusing chemotherapy, how social media is fuelling the rise of fake cancer cures. The Telegraph. Retrieved from https://www.telegraph.co.uk/global-health/science-and-disease/young-mother-dies-refusing-chemotherapy-social-media-fuelling/
Dubrofsky, R. E. (2016). A vernacular of surveillance: Taylor Swift and Miley Cyrus perform white authenticity. Surveillance & Society, 14(2), 182–196. https://doi.org/10.24908/ss.v14i2.6022
Dubrofsky, R. E., & Ryalls, E. (2014). The hunger games: Authenticating whiteness and femininity under surveillance. Critical Studies in Media Communication, 31(5), 395–409. https://doi.org/10.1080/15295036.2013.874038
Duffy, B. E. (2015). Amateur, autonomous, and collaborative: Myths of aspiring female cultural producers in Web 2.0. Critical Studies in Media Communication, 32(1), 48–64. https://doi.org/10.1080/15295036.2014.997832
Duffy, B. E. (2017). (Not) getting paid to do what you love: Gender, social media and aspirational work. New Haven, CT: Yale University Press.
Duffy, B. E., & Hund, E. (2019). Gendered visibility on social media: Navigating Instagram’s authenticity bind. International Journal of Communication, 13, 4983–5002.
Engel, E., Gell, S., Heiss, R., & Karsay, K. (2024). Social media influencers and adolescents’ health: A scoping review of the research field. Social Science & Medicine, 340, 116387. https://doi.org/10.1016/j.socscimed.2023.116387
Gage-Bouchard, E. A., LaValley, S., Mollica, M., & Beaupin, L. K. (2017). Cancer communication on social media: Examining how cancer caregivers use Facebook for cancer-related communication. Cancer Nursing: An International Journal for Cancer Care Research, 40(4), 332–338. https://doi.org/10.1097/ncc.0000000000000418
Gentile, D., Markham, M. J., & Eaton, T. (2018). Patients with cancer and social media: Harness benefits, avoid drawbacks. Journal of Oncology Practice, 14(12), 731–736. https://doi.org/10.1200/jop.18.00367
Glaser, B. G., & Strauss, A. L. (1999). The discovery of grounded theory: Strategies for qualitative research. New York, NY: Routledge.
Haimson, O. L., Liu, T., Zhang, B. Z., & Corvite, S. (2021). The online authenticity paradox: What being “authentic” on social media means, and barriers to achieving it. Proceedings of the ACM on Human–Computer Interaction, 5(CSCW2), 1–18. https://doi.org/10.1145/3479567
Hearn, A. (2008). “Meat, mask, burden”: Probing the contours of the branded “self”. Journal of Consumer Culture, 8(2), 197–217. https://doi.org/10.1177/1469540508090086
Hearn, A. (2017). Verified: Self-presentation, identity management, and selfhood in the age of big data. Popular Communication: The International Journal of Media and Culture, 15(2), 62–77. https://doi.org/10.1080/15405702.2016.1269909
Heiss, R., & Rudolph, L. (2023). Patients as health influencers: Motivations and consequences of following cancer patients on Instagram. Behaviour & Information Technology, 42(6), 806–815. https://doi.org/10.1080/0144929X.2022.2045358
Hendry, N. A., Hartung, C., & Welch, R. (2022). Health education, social media, and tensions of authenticity in the “influencer pedagogy” of health influencer Ashy Bines. Learning Media and Technology, 47(4), 427–439. https://doi.org/10.1080/17439884.2021.2006691
Hodson, J., & O’Meara, V. (2023). Curating hope: The aspirational self and social engagement in early-onset cancer communities on social media. Social Media + Society, 9(3), 1–12. https://doi.org/10.1177/20563051231196868
Johnson, S. B., Parsons, M., Dorff, T., Moran, M. S., Ward, J. H., Cohen, S. A., . . . Fagerlin, A. (2022). Cancer misinformation and harmful misinformation on Facebook and other social media: A brief report. Journal of the National Cancer Institute, 114(7), 1036–1039. https://doi.org/10.1093/jnci/djab141
Kreling, R., Meier, A., & Reinecke, L. (2022). Feeling authentic on social media: Subjective authenticity across Instagram stories and posts. Social Media + Society, 8(1). https://doi.org/10.1177/20563051221086235
Krishna, A., & Amazeen, M. A. (2022). Narrative counters: Understanding the efficacy of narratives in combating anecdote-based vaccine misinformation. Public Relations Review, 48(5), 695–697. https://doi.org/10.1016/j.pubrev.2022.102251
Kroenke, C. H., Kwan, M. L., Neugut, A. I., Ergas, I. J., Wright, J. D., Caan, B. J., . . . Kushi, L. H. (2013). Social networks, social support mechanisms, and quality of life after breast cancer diagnosis. Breast Cancer Research and Treatment, 139(2), 515–527. https://doi.org/10.1007/s10549-013-2477-2
Lazard, A. J., Reffner Collins, M. K., Hedrick, A., Varma, T., Love, B., Valle, C. G., . . . Benedict, C. (2021). Using social media for peer-to-peer cancer support: Interviews with young adults with cancer. Journal of Medical Internet Research Cancer, 7(3), e28234. https://doi.org/10.2196/28234
Li, Y.-J., Cheung, C. M. K., Shen, X.-L., & Lee, M. K. O. (2019). Health misinformation on social media. Pacific Asia Conference on Information Systems (PACIS 2019) Proceedings, 194. Retrieved from https://aisel.aisnet.org/pacis2019/194
Loeb, S., Langford, A. T., Bragg, M. A., Sherman, R., & Chan, J. M. (2024). Cancer misinformation on social media. CA: A Cancer Journal for Clinicians, 74(5), 453–464. https://doi.org/10.3322/caac.21857
Lutkenhaus, R. O., Jansz, J., & Bouman, M. P. (2019). Tailoring in the digital era: Stimulating dialogues on health topics in collaboration with social media influencers. Digital Health, 5, 1–11. https://doi.org/10.1177/2055207618821521
Marocolo, M., Meireles, A., Rodrigues de Souza, H. L., Mota, G. R., Oranchuk, D. J., Arriel, R. A., & Reos Leite, L. H. (2021). Is social media spreading misinformation on exercise and health in Brazil? International Journal of Environmental Research and Public Health, 22(18), 11914. https://doi.org/10.3390/ijerph182211914
Marwick, A. (2013). Status update: Celebrity, publicity, and branding in the social media age. New Haven, CT: Yale University Press.
Marwick, A. (2015). You may know me from YouTube: (Micro-)celebrity in social media. In P. D. Marshall & S. Redmond (Eds.), A companion to celebrity (pp. 333–350). Oxford, UK: Wiley-Blackwell.
Morgan, G., Tagliamento, M., Lambertini, M., Devnani, B., Westphalen, B., Dienstmann, R., . . . Peters, S. (2021). Impact of COVID-19 on social media as perceived by the oncology community: Results from a survey in collaboration with the European Society for Medical Oncology (ESMO) and the OncoAlert Network. European Society for Medical Oncology Open, 6(2), 100104. https://doi.org/10.1016/j.esmoop.2021.100104
Mulcahy, R., Barnes, R., de Villiers Scheepers, R., Kay, S., & List, E. (2024). Going viral: Sharing of misinformation by social media influencers. Australasian Marketing Journal, 33(3), 296–309. https://doi.org/10.1177/14413582241273987
O’Meara, V. (2023). Influencer engagement pods and the struggle over measure in Instagram platform labour (Doctoral dissertation, Western University, London, Canada). Electronic Thesis and Dissertation Repository, No. 8808. Retrieved from https://ir.lib.uwo.ca/etd/8808
O’Sullivan, N. J., Nason, G., Manecksha, R. P., & O’Kelly, F. (2022). The unintentional spread of misinformation on “TikTok”: A paediatric urological perspective. Journal of Pediatric Urology, 18(3), 371–375. https://doi.org/10.1016/j.jpurol.2022.03.001
Parks, M. (2021, March 25). Few facts, millions of clicks: Fear mongering vaccine stories go viral online. NPR. Retrieved from https://www.npr.org/2021/03/25/980035707/lying-through-truth-misleading-facts-fuel-vaccine-misinformation
Petrie, B. (2023, April 12). How misinformation became the leading cause of death in the U.S. and what can be done about it [Radio broadcast]. Texas Public Radio. Retrieved from https://www.tpr.org/podcast/petrie-dish/2023-04-21/how-misinformation-became-the-leading-cause-of-death-in-the-u-s-and-what-can-be-donedo-about-it
Shelby, A., & Ernst, K. (2013). Story and science: How providers and parents can utilize storytelling to combat anti-vaccine misinformation. Human Vaccines and Immunotherapies, 9(8), 1795–1801. https://doi.org/10.4161/hv.24828
Shoenberger, H., Kim, E. A., & Johnson, E. K. (2020). #Beingreal about Instagram ad models: The effects of perceived authenticity. Journal of Advertising Research, 60(2), 197–207. https://doi.org/10.2501/JAR-2019-035
Szeto, E., Cowley, J., & Common, D. (2023, January 20). He calls himself a doctor and promises to cure cancer: Critics say he’s profiting from misinformation. CBC News. Retrieved from https://www.cbc.ca/news/health/marketplace-darrell-wolfe-investigation-1.6718608
Taylor, C. (1992). The ethics of authenticity. Cambridge, MA: Harvard University Press.
Thompson, J. D. (2022). Public health pedagogy and digital misinformation: Health professional influencers and the politics of expertise. Journal of Sociology, 59(3), 646–663. https://doi.org//10.1177/14407833221128592
Tolson, A. (2010). A new authenticity? Communicative practices on YouTube. Critical Discourse Studies, 7(4), 277–289. https://doi.org/10.1080/17405904.2010.511834
van Nuenen, T. (2019). Algorithmic authenticity: Sociotechnical authentication processes on online travel platforms. Tourist Studies, 19(3), 378–403. https://doi.org/10.1177/1468797619832314
Visozo, A., Vaz-Álvarez, M., & López-García, X. (2021). Fighting deepfakes: Media and Internet giants’ converging and diverging strategies against high-tech misinformation. Media and Communication, 9(1), 291–300. https://doi.org/10.17645/mac.v9i1.3494
Wang, W., & Skovira, R. J. (2017). Authenticity and social media. Americas Conference on Information Systems 2017 Proceedings, 7, 3010–3020. Retrieved from https://aisel.aisnet.org/amcis2017/PhilosophyIS/Presentations/7
Wardle, C., & Derakhshan, H. (2017). Information disorder: Towards an interdisciplinary framework for research and policy-making. Council of Europe. Retrieved from https://firstdraftnews.com/resource/coe-report/
Warner, E. L., Kirchhoff, A. C., Ellington, L., Waters, A. R., Sun, Y., Wilson, A., & Cloyes, K. G. (2020). Young adult cancer caregivers’ use of social media for social support. Psycho-oncology, 29(7), 1185–1192. https://doi.org/10.1002/pon.5402
World Economic Forum. (2024, January 10). Global risks 2024: Disinformation tops global risks 2024 as environmental threats intensify [Press release]. Retrieved from https://www.weforum.org/press/2024/01/global-risks-report-2024-press-release/
Copyright © 2026 (Victoria O’Meara, Esteban Morales, and Jaigris Hodson). Licensed under the Creative Commons Attribution Non-commercial No Derivatives (by-nc-nd). Available at https://ijoc.org.
https://doi.org/10.65476/b9mpk350