Their Truth is Out There: Scientific (Dis)trust and Alternative Epistemology in Online Health Groups

Abstract

The information-sharing practices within alternative health social media groups makes them important spaces for analyzing and understanding the factors shaping the online spread of alternative health and health science (mis)information. Through interviews and observation of participants in alternative health groups on both Facebook and Reddit, we explore how people use health science information from government, health, and news sources, alternative health information from social media groups, and their own personal experiences and concerns to define informational (dis)trustworthiness. We identify factors that lead participants to (dis)trust health science information and explore how members assess the (dis)trustworthiness of health science information using an alternative epistemology. This alternative epistemology, or “their science,” demonstrates a trust in science unless or until it contradicts members’ experiences, beliefs, contextual concerns, or their own “research” practices.

Social media groups formed around common interests in health and science can function as important sources of news and information for group members (Hess & Gutsche, 2018). However, those same social media groups can also be spaces where inaccurate health and science information is shared among members (Tambuscio et al., 2015). This is especially true with groups forming around alternative health, which can be defined as health information that has not been “scientifically researched and consequently approved by professional associations” (Du Pré, 2014, p. 175). People join these groups to seek out alternative health and science information sources that may run contrary to, are skeptical of, or even dismissed by official health and science sources, agencies or organizations, and experts (Zimdars et al., 2023).

In alternative health groups on Facebook and Reddit, credible health and science information, pseudoscience (see Kaufman & Kaufman, 2018) and alternative health information, and health and science mis/disinformation (e.g., information known to be inaccurate or outright false, ineffective or even harmful) all circulate simultaneously through user posts, comments, and shared articles, videos, and memes. This phenomenon was particularly troubling during the height of the COVID-19 pandemic (Baker, 2020), as people across the United States (and elsewhere) struggled to determine how to trust information coming from a multitude of official and unofficial sources—with many people flocking to social media platforms, including alternative health groups and subs, for information. As such, the COVID-19 pandemic posed a tremendous challenge for governments and public health organizations, which needed to convince people to follow critical health recommendations, including vaccination recommendations. In the United States, this challenge remains exacerbated by our information context, which many still consider to be experiencing an “infodemic” (Siapera, 2022). Indeed, in our contemporary information context, where health misinformation is rampant across social media platforms (e.g., Brennen et al., 2020; Lavorgna et al., 2018), people have low levels of societal trust in institutions and official information sources (Oreskes & Conway, 2022; Pechar et al., 2018), and people have higher levels of conspiratorial thinking (Douglas & Sutton, 2018), which is not particularly conducive to our collective ability to make informed health choices for ourselves as individuals or for the public good.

People’s understandings of whether information in alternative health spaces constitutes science or pseudoscience, health information or mis/disinformation, reliable or unreliable, trustworthy or untrustworthy are influenced by their perceived social, cultural, political, economic, and health care contexts, as well as individual factors like beliefs, ideologies, science knowledge, media literacy, and the medium of communication (e.g., Anderson, 2021; Bowman & Cohen, 2020; Ecker et al., 2022; Hecht, 2018; Polage, 2020). Their understanding of whether information in these spaces constitutes science or pseudoscience is also connected to the increasingly blurred boundaries between science, pseudoscience, and alternative health within health and medical systems and practices (Gorski, 2018). Furthermore, people’s understanding of information in these spaces connects to a waning trust in scientists, governments, and news (e.g., Baker, 2022a; Drążkiewicz, 2021; Oreskes & Conway, 2022; Pechar et al., 2018; Sobo, 2021). Moreover, when trust or confidence is low, it can open the door to alternative information sources (e.g., Baker, 2022a; Bennett & Livingston, 2018).

The prominence of alternative health groups on social media platforms, the health science information-sharing practices within these groups, and the general importance of exploring people’s engagement with science and research on social media platforms to better understand contemporary science communication (Hargittai et al., 2018) make them essential spaces for analyzing the spread of alternative health and science (mis)information and the conditions that contribute to the (dis)trust of health science and sources circulating health science information. The goal of our interview and observational study is to analyze the factors, experiences, and/or contexts that contribute to alternative health group members (dis)trusting different health and science information sources and how people in alternative health groups assess the (dis)trustworthiness of science and science information sources. Better understanding the factors and contexts that come to bear on the production, distribution, and reception of health (mis/dis)information is necessary for making sense of why, especially in the wake of COVID-19, vaccine confidence is falling while belief in health misinformation is rising (Annenberg Public Policy Center, 2023).

Our study demonstrates how group members use health science information sources and news reports, alternative health and science information sources, and their own personal experiences and concerns to define (dis)trustworthiness and create an alternative epistemology “predicated upon different strategies for establishing ‘truth’” (Robertson & Amarasingam, 2022, p. 194). Therefore, in this article, we argue that people in alternative health groups thus trust in what we call “their science” as a form of knowledge authority. “Their science” is an alternative epistemology wherein science remains a strategy for establishing or accessing “truth” unless or until that science or scientific information contradicts or challenges an individual’s political beliefs, personal experiences, and so on. More specifically, trusting science coexists with perceived problems related to health science news, governments and the politicization of health science and manufactured scientific controversy, and the increased societal valuation of personal experience as another strategy for establishing or accessing “truth” (Robertson & Amarasingam, 2022), engendering “their science” as an alternative health and science epistemology that thrives within alternative health social media groups.

Theoretical Framework and Literature Review

Gieryn’s (1999) “Cultural Boundaries of Science” demonstrates how the boundaries and meanings of science, including the boundaries and meanings of health, are determined beyond the confines of research labs and academic journals. Science ideas permeate and are constituted across various spaces, from boardrooms and living rooms to newspapers and talk shows and across the internet and social media platforms, which can engender contestations of scientific knowledge. Gieryn (1999) argues that part of these contestations of science or scientific ideas, which are “lay-of-the-culture representations of science,” include some groups putting forward “compelling narrations for why my science (but not theirs) is bona fide” (p. 4). This boundary work or debates over science do not just happen between scientists and the public. They also happen between scientists and multiple publics, creating a science factionalism wherein people use “faction-based identity language” to “categorize themselves into factions that support or oppose a science issue” (Chen et al., 2022). As Rousseau (2021) suggests, people use social media and other platforms to put forward their group’s worldview, which is “both formed and validated by the similarly amplified arguments and evidence they are exposed to” (p. 123). Indeed, what increasingly matters in interpretations of science is whether information “supports or threatens an individual’s cultural worldview” (Pechar et al., 2018, p. 296). How people understand scientific facts or determine “what the relevant facts are” in a given scientific debate (Rousseau 2021, p. 123) is influenced by people’s social values, politics, and identities, among other things (e.g., Nisbet & Scheufele, 2009).

The credibility of scientific knowledge is also tied to problems with science itself and science communication. For instance, the US public’s confidence in the objectivity of science has been undermined by decades of systemic issues that put limitations on scientific inquiry (e.g., Taubes, 2007); a lack of transparency that shapes public understanding of science (e.g., McGarity & Wagner, 2008); the difficulty of the lay public to understand the inherent uncertainty of science (e.g., Ceccarelli, 2011; Seethaler, 2009); questions about corporate sponsorship of research and the pressure to achieve results that align with what will make a profit (McGarity & Wagner, 2008); ongoing scientific controversies across public health (Oreskes & Conway, 2010); flip-flopping diet science (Taubes, 2008); and ongoing corporate interference in health and medicine (Hilgartner, 2000).

Survey research shows that while a majority (73%) of people in the United States do have a “great deal or fair amount of confidence in scientists to act in the public’s best interests,” trust in science and scientists is declining (Pew Research Center, 2022a). Furthermore, this declining trust in science is happening along partisan lines in the United States, with Republicans more distrusting of science than Democrats (Jones, 2021). However, it is not that Republicans or the political right reject science in general; instead, they reject scientific knowledge or research outcomes requiring government action when that action conflicts with their worldviews, especially their anti-regulatory beliefs (Oreskes & Conway, 2022). Environmental and health sciences, in particular, necessitate or are perceived to necessitate government regulation and action (Oreskes & Conway, 2022, p. 100) during a time when trust in government among the political right is at a 60-year low (Pew Research Center, 2022b). Thus, these links between science and government action, coupled with the fact that a crucial component of the cultural and political motivations that shape people’s risk perceptions involves personal preference about the role of government in society (e.g., Drążkiewicz, 2021; Jasanoff, 1990; Pechar et al., 2018; Sobo, 2021; van der Linden, 2016), means that science—or at least certain kinds of science, like health science—are viewed as a potential source of political or governmental power (Chen et al., 2022).

Contemporary understandings and criticisms of science related to governments and politics echo and overlap with challenges to public understandings and perceptions of journalism or news, including health and science news. Although contemporary trust in mainstream, national news organizations is significantly lower among Republicans than Democrats in the United States (Gottfried & Liedke, 2021), demonstrating a similar partisan divide in perception of trust in government and trust in science, public distrust, and even cynicism toward news media is a long-standing and widespread issue (e.g., Cappella & Jamieson, 1997; Markov & Min, 2022; Park et al., 2020). Public trust in news and journalism is challenged by the many well-documented problems that impact whose stories are told, how those stories are told, and whether stories may be told at all (e.g., Pickard, 2020; Usher, 2021). Science journalism is especially complicated due to the episodic nature of news storytelling (Dunwoody, 2008), journalistic attempts to balance competing claims (Boykoff & Boykoff, 2004), the influence of social values and knowledge on how journalists themselves make sense of science (Nisbet & Scheufele, 2009), and scientific accuracy (Dunwoody, 2008). In addition, the overall amount of scientific coverage by mainstream news organizations has declined over the years, leaving social media platforms as one of the dominant ways people learn about science issues (Mueller-Herbst et al., 2020).

The speed at which vast amounts of information are produced and circulated on social media may further challenge the public’s trust in the informational authority of scientific experts, governments, and mainstream news organizations (Dahlgren, 2018). For example, during the beginning of the COVID-19 pandemic, some of the most prominent sources of news on Twitter came from celebrities, politicians, and alternative health influencers or conspiracy theorists rather than from scientists or entities like the Centers for Disease Control and Prevention (CDC) (Belvins et al., 2021). However, as van Dijck and Alinejad (2020) remind us, “scientific knowledge-making” has “always been part of a dynamic process in which expert voices—framed by scientific, governmental, and media institutions—get interwoven with nonexpert voices in the struggle for public consent” (p. 3). Indeed, van Dijck and Alinejad (2020) argue that the linear model of science communication has transformed into a networked model of science communication. A networked model of science communication captures how social media acts as a “centrifugal force, changing the dynamics of information exchange in a public debate” between scientific experts, news media, policy-makers, and publics (van Dijck & Alinejad, 2020). This model illuminates how science communication is both “one-to-many” as well as “many-to-many,” where experts and nonexperts, data, facts, emotions, and experiences are all “processed algorithmically, affecting the information cycle in real time” (van Dijck & Alinejad, 2020). Furthermore, this networked model of science communication could also include alternative health influencers who circulate health mis/disinformation and deliberately generate distrust in official health and science information sources to build and profit from their online followings (Baker, 2022a, 2022b; Zimdars, 2024).

Ultimately, the relationship between health science, in particular, social media, governments, and news organizations are part of what Waisbord (2018) refers to as “seismic changes in public communication—the end of information scarcity, multilayered news and communication environments, and the active role of publics in news production, access, and use” (p. 1868). As a result, our contemporary health science information context is one characterized by “contested truths” where individuals engage with information via “identity communities with different epistemologies” (Waisbord, 2018, p. 1869). This disruption leads to a social redefining of “truth”—which Waisbord (2018) explains as “the result of the way publics interpret reality as they constantly scan, navigate, avoid, and understand information” (p. 1873). In short, how people might differently conceptualize truth is the result of shared or collective sense-making. When it comes to reporting and information sharing, then, Waisbord (2018) argues that:

Misinformation and contested truths are constitutive of today’s dynamics, multilayered, chaotic public communication. The fundamental challenge is the transformation of the public sphere driven by the digital proliferation of opportunities for public expression and identity communities with different epistemologies in their engagement with news and information. (p. 1869)

Therefore, part of the problem is that an individual’s emotional investment in their beliefs can often be strengthened by what they find and share online. As Rousseau (2021) argues, “the problems introduced by emotional investment . . . [are] when individuals’ deep convictions are challenged and they dig in their epistemic heels” (p. 124). This means that when people consider competing arguments or evidence, they may view such information as threatening to their own beliefs and worldviews, thus “committing themselves to those beliefs even more strongly, rather than being motivated to take the counterarguments seriously” (Rousseau, 2021, p. 124).

Our analysis will show that alternative health group members say they generally trust science despite discussing numerous reasons for distrusting health science information coming from different sources. This is similar to Harambam and Aupers’ (2015) analysis of conspiracy theorists, who were not “against science,” but who challenged the “epistemic authority” of science perceived as lacking a “free spirit of inquiry” (pp. 11–12). Science remains a prominent form of “epistemic capital” (Robertson & Amarasingam, 2022, p. 195) in alternative health groups. However, “all socialized fields of knowledge” are “constituted with multiple types of knowledge claims, or epistemic modes,” and certain “epistemic modes are likely to be more persuasive in different contexts” (Robertson & Amarasingam, 2022, pp. 194–195). In alternative health groups, the epistemic capital of science in the form of health science is constituted with—and often competes with—another valued way of knowing: the epistemic capital of experience. Essentially, personal experiences are one way people access “truth” or determine whether health science information from different sources is truthful or authoritative. Something is true when it feels true, according to people’s personal experiences or concerns.

In alternative health groups, learning about other people’s experiences can become as valuable as one’s own experiences for accessing “truth” and assessing trustworthiness (see Drążkiewicz, 2021; Sobo, 2021). In other words, hearing or reading other people’s stories is a personal experience producing important knowledge. These seemingly contradictory ways of knowing, through trust in the epistemic capital of both science (collective, rational) and experience (individual, emotional) (Robertson & Amarasingam, 2022), create an alternative epistemology wherein science is trusted unless or until it contradicts with experience, as is the case with health science.

The following research questions help us explain how members of identity communities like alternative health groups navigate health science information and how that relates to members’ perceptions of truth and definitions of (dis)trust according to alternative epistemologies:

• RQ1. What factors, experiences, or contexts contribute to alternative group members (dis)trusting different health science information sources?

• RQ2. How do people in alternative health groups assess the (dis)trustworthiness of health science information sources?

We want to emphasize that this project is not about determining the veracity or trustworthiness of alternative health information, nor is it about assessing the logics or reasons behind people’s concerns and beliefs or those underpinning different kinds of information circulating in these social media spaces. Rather, we explore how people make sense of health science information and alternative health information in the “broader context of epistemological insecurity” wherein the “authority of science is eroding, scientific ‘findings’ are always contested, and where alternative knowledge claims are produced” (Harambam & Aupers, 2015, p. 2).

Method

This study is a secondary analysis of interview data collected about alternative health social media group members (see Zimdars et al., 2023), although the data for this analysis stems from a specific set of questions asked during 19 semi-structured interviews with alternative health group members. We recruited participants from over a dozen public Facebook alternative health groups and four Reddit subs after Facebook shut down our intended site of analysis for spreading COVID-19 mis/disinformation (Gilbert, 2021): “Health Nut News,” which had over half a million group members. Interview participants were required to be at least 18 years old and living in the United States, but other than that they were selected largely based on willingness to talk to us. Some group members were actively suspicious of researchers, but others were thrilled for the opportunity to be heard. As allowed by our institutional review board, we also joined a few private but searchable and visible Facebook groups and asked moderators or administrators for permission to post our recruitment materials. Some of the moderators and administrators of these groups also volunteered to be interviewed.

Pseudonyms were assigned to each participant to ensure anonymity. Interviews were conducted online and lasted between 10 and 80 min, with an average of 20 min per interview. Our interviewees ranged in age from 19 to 66 years old, with 12 men and seven women. We requested racial demographic information, in addition to levels of educational attainment, political beliefs (ranging from “very liberal” to “very conservative”), and location demographics (see Appendix A). Interviews were conducted from August to December 2021, and the authors audio-recorded and transcribed each interview.

We supplemented our interview analysis by observing the information and sources posted and discussed in these groups between April and December of 2021. These observations are best described as “deep lurking” (Lee et al., 2021, as cited in Tripodi, 2022b, p. 324). During that time, we visited the Facebook groups and Reddit subs we recruited from at least once per week. During these visits, we read people’s posts and subsequent comment discussions, followed links to external websites, took notes on the topics appearing and debates emerging in these spaces, and saved links to example posts as well as shared news sources and videos.

The groups and subs we observed and recruited interview participants from were selected because they discuss alternative health and wellness topics, specifically, “natural” alternatives to medications (e.g., essential oils, herbal medicine, homeopathy, naturopathy, supplements) and health interventions (e.g., acupuncture, chiropractic manipulation, cupping, massage), or because they debate different topics of health topics (e.g., COVID-19, the efficacy and/or safety of vaccines or medications, processed or genetically modified foods). These public and private groups range in number from a hundred members to tens of thousands, and they often go by variations of names like “Alternative Health,” “Health Freedom,” and “Holistic Health.” We would like to note that while academics ascribe very specific meanings to these terms (see Baker, 2022a, 2022b; Baker & Rojek, 2020; Kaufman & Kaufman, 2018), the groups and subs were named by each group’s creator, administrators, or moderators, so we saw discussions of all kinds in our observations and across our data set, despite the topics listed in each group’s title. Participants engaged across the full spectrum of alternative health discourses across our study sites. Some participants were promoting conspiratorial politics as seen by Baker (2022a) or Tripodi (2022b), but others joined these groups to find help for untreatable (or undiagnosable) issues, as described in Drążkiewicz (2021). Some simply joined looking for information and community support (Zimdars et al., 2023). Within all of these groups, people actively talked about a variety of treatment options or at-home remedies, the efficacy or safety of different medications and vaccinations, the reliability or trustworthiness of different sources of information, and the reliability or trustworthiness of different individuals, entities, and organizations.

We textually analyzed our transcripts and observational data using an iterative approach, choosing to alternate between the consideration of existing theories and research interests and emergent qualitative data (Tracy, 2013). An iterative approach is a reflexive practice that requires “visiting and revisiting the data and connecting them with emerging insights, progressively leading to refined focus and understandings” (Srivastava & Hopwood, 2009, p. 77). This revisiting and reflexive practice helped us identify patterns in our interview transcripts and in our observations related to alternative health group members’ views on the (dis)trustworthiness of different sources of information, factors, and experiences contributing to those perceptions of (dis)trustworthiness, and the practices users engage in to assess (dis)trustworthiness and find (e.g., through search engines and social media) health science information they perceive as trustworthy.

Findings

Several key themes emerged through our interview analysis and observations, specifically a willingness and even desire of participants in alternative health groups to trust scientific information from government and news sources. However, our data shows a struggle to reconcile this willingness and desire over their concerns and personal experiences, making them skeptical or distrustful of health science information from news sources. As such, alternative group members navigate their health science concerns by engaging in their versions of “research,” fact-checking, or media literacy practices (see Tripodi, 2022a), and they express confidence in their own abilities to assess the trustworthiness of information. This led to two key themes emerging from our data: (1) interview participants spoke of trusting science generally, but distrusting health science specifically and (2) they do trust their explorations of and abilities to assess science information.

Our exploration suggests that the way alternative group members “know” which sources to trust or distrust is guided by “their science,” or the alternative health identity community to which they belong and the alternative epistemology valued therein. Alternative group members use different strategies to assess (dis)trustworthiness—particularly in terms of “what kinds of knowledge are prioritized and legitimized within groups” (Robertson & Amarasingam, 2022, p. 194). In what follows, we examine this (dis)trust as articulated by study participants.

Distrusting Health Science Information

The first major theme, distrust of health science information, showed participant dissatisfaction with their ability to access what they considered to be credible health science information—both concerning COVID-19 and many other health science concerns. Participants expressed frustrations or problems with mainstream news networks, government organizations like the CDC and the Food and Drug Administration (FDA), government-sponsored health science research, and even with their own health care providers. And yet, we noticed participants repeatedly trying to explain that they didn’t want to be distrustful—they just had too many reasons not to be.

For instance, many of our interview participants said they trust the news for health science information but contextualized their responses by saying that this trust “depends on the outlet.” Patrick stated that he does not trust national news organizations but does trust his local newspaper. This contradiction reflects survey data showing that trust in local news organizations remains high among most people in the United States (Liedke & Gottfried, 2022). Jerry explained that he continuously checks different sources because “what’s said on, maybe ABC, is going to be the opposite on another station.” Similarly, Belinda referenced her skepticism with some health science news, stating, “I mean, obviously, it’s got to be cherry-picked to some extent . . . They can’t be reporting on every single discovery.” She followed this up, however, by stating that she still actively seeks her news from certain big-name media outlets, like The New York Times, The Washington Post, The Atlantic, and a few regional news organizations.

When asked to elaborate on their reasons for (dis)trusting health science news, interview participants reported reasons for distrust that largely mirrored previous science journalism research—often criticizing journalists and news organizations for the way stories are told and raising questions about reporting practices, inconsistencies in information within and across news stories, and concerns about the financial motivations or conflicts of interest of news organizations. For example, Patrick stated, “Health news is just a journalist reading an abstract if we’re lucky. Half the time I think they just report on the title of a research paper.” Similarly, Celeste argued that health news “is terrible. It’s all clickbait. Eat this. Never mind! Drink this. Never mind! . . . they don’t know anything.” In addition, Belinda mentioned how, over the years, articles come out about the benefits of certain foods, such as coffee or chocolate, only to be contradicted by more articles about the dangers of coffee or chocolate and then contradicted yet again by articles about the new benefits of coffee or chocolate. Belinda attributes some of this “confusion” to journalists chasing good “ratings” or trying to monetize engagement.

Furthermore, nearly all of our interview participants expressed concern over the influence of money on health science news. Johnny expressed unease about some news sources because he understands them as “twisting information for shareholder benefits.” Similarly, Peter stated, “They are just trying to get views. They’re just after their own goods, their own profits.” Some of our interview participants even expressed concerns over the relationships between news organizations and other industries or the government. As Belinda explained:

. . . I don’t know what the studies are for how certain outlets, the New York Times or whatever, was involved in the sugar industry promoting that fats are bad, and so there’s all this information about fats being bad and not about sugar, and that’s not being covered, so obviously that probably plays into some information that comes out to the public that isn’t necessarily for the people’s good.

In addition, Jenny referred to health science reporting as “extremely watered-down” and “politicized” because of “hidden agendas [and] . . . financial conflicts of interests.” She stated, “I think there is accurate scientific data available. I don’t think it is readily presented to the public so that they can make informed decisions.”

This lack of information and concerns about the censorship of alternative health information or “their science” were common complaints among our interview participants and observed in alternative health group posts and discussions. For example, a particularly discussion-generating post shared in one of the alternative health Facebook groups we observed simply stated, “Fact Checkers Didn’t Exist Until the Truth Started Getting Out.” Dozens of comments on the post lamented the lack of alternative health coverage across news outlets. Other comments referenced specific examples of health science news “censorship,” such as lack of coverage about a video involving vaccine safety from an “insider whistleblower,” “leaked” FDA data about the adverse effects of the COVID-19 vaccine, and “natural ways” to treat health issues that are allegedly used by prominent figures like former Chief Medical Advisor to the President, Dr. Fauci, but not shared with the general public. When articles or fact-checking stories in the mainstream news do address these examples, typically in the form of debunking their claims, some alternative health group members see that as “covering up the truth.”

In addition to concerns over health science news, our interview participants also remarked on their concerns over connections between the authority of institutional science and government—especially concerning their distrust of political decision-making regarding health issues. Celeste referred to the government as “corrupt” and argued that she trusts both her doctors over any health science information coming from governing bodies like the CDC. Samuel, meanwhile, cited past instances of government malfeasance related to health, stating, “You can look at all kinds of examples of our government doing totally unethical things . . . literally killing people for ‘the sake of knowledge.’” Sophia argued that “science always changes on things. Smoking is good for you. Spraying DDT. These proven things make me not believe anything that comes from the government.” Finally, both Belinda and Brennan cited the controversy over the United States promotion of the food pyramid, referring to how the U.S. Department of Agriculture’s recommendations have a history of prioritizing corporate profits over the health of people (see Nestle, 2002) as a primary reason for their distrust.

Although our interview participants generally trust their health care providers (despite frustrations with lack of access or delayed diagnoses), many detail skepticism of and concern over the relationships between health care providers, health science information and policies emerging from governments, and “Big Pharma.” Among alternative health groups, there is a perception that “Big Pharma” “owns” the government and our medical system, resulting in a refusal to consider “alternative” treatment options because they are not profitable to pharmaceutical companies. This issue is especially salient concerning COVID-19. For example, Celeste, who identified as a nurse, says she felt violated by her primary care provider when she disclosed to her provider that she was taking Ivermectin, which was a popular form of “treatment” for COVID-19 in alternative health groups despite evidence for its ineffectiveness. Celeste stated,

I tried to talk to my doctor about these things like that I take Ivermectin sometimes. She got in my face and she was like “Don’t take this! I don’t believe in conspiracy theories!” A few minutes later she says, “You know, I have to report this.” I left there crying because I was frustrated. She’s no longer my primary care physician.

Posts across alternative health groups on Facebook and Reddit relayed similar stories of health care providers—as well as health science news stories—rejecting Ivermectin as a viable treatment for COVID-19. Many of the discussions on this topic in alternative health groups suggest that this is the result of censorship or government corruption and “Big Pharma” pushing vaccines over “readily available” treatment alternatives. This rejection of “alternative information” or certain treatments makes interview participants, like Phillip, say they turn to alternative health groups for information.

Concerns over the influence of “Big Pharma” on governments and health care systems—and thus health science—also came up frequently in our interviews and observational data about other health issues. Several participants perceive our health care system as overly reliant on pharmaceutical interventions. Sophia specifically claimed that “most of life is pushing medicines.” Celeste lamented that medical doctors and researchers do not recommend Vitamin D supplements for depression, instead of antidepressants, because it is not as profitable. To her, the pharmaceutical intervention, rather than the recommendation and use of Vitamin D supplements, is motivated by profit-seeking. Samuel similarly explained,

I believe there are a lot of things that we could be doing that we don’t because it isn’t financially lucrative. We focus on treatment because prevention doesn’t make money. I should say we focus on expensive treatments when lifestyle changes could help.

Although our participants said they generally trust the safety and effectiveness of products and treatments created by pharmaceutical companies, they collectively made dozens of references to distrusting when pharmaceutical interventions are the only or primary treatment of health issues without consideration of—or in total rejection of—alternatives. Indeed, the most common type of videos posted to alternative health groups during this time were typically created by well-known alt-health influencers like Dr Christiane Northrup and Ty and Charlene Bollinger (Zimdars, 2024), and detailed the way governments and pharmaceutical companies were conspiring to profit from requiring people to take “inadequately tested” and “potentially unsafe” COVID-19 vaccinations. Alternative health group members say they do not inherently distrust vaccines, but they distrust when vaccines are required, such as by the government, employers, or educational institutions. They ultimately trust “their science” and distrust when science connects to government decision-making affecting their decision-making. For group members, this raises questions about the financial profit-motivations of pharmaceutical companies, their relationships with the government, and even the news. It also raises concerns over bodily autonomy. Members want to be able to decide for themselves after weighing different kinds of evidence, including their personal experiences and the experiences of those around them and within the social media groups.

Trusting “Their Science” and Their Own “Research”

Although participants discussed frustration about the trustworthiness of different news organizations, government entities, and even their own health care providers, we found that they expressed a lot of confidence in their abilities to assess health science information. As we interviewed members of alternative health groups, participants actively expressed that they chose to turn to social media, and specifically, to their alternative health groups, for the health science information that goes unreported or that is rejected by national news organizations. Brennan “regularly visits a few YouTube channels, a newsletter from a nutritionist, and all other information comes from various people I follow on social media.” Rose explained that she “follow[s] some doctors on social media,” while Crystal said she follows a variety of social media health accounts and engages with information in her Facebook newsfeed, such as graphics, headlines, and videos. In addition, Douglas said he would trust Pierre Kory, who rose to prominence during the COVID-19 pandemic because of his willingness to use “alternative treatments,” before following government recommendations, adding “They’ve gotten so corrupt.” Our observations of alternative health groups show that many doctors or “experts” referenced in our interviews are the previously mentioned alt-health influencers (Baker, 2022a, 2022b; Zimdars, 2024) who circulate health mis/disinformation across social media platforms. Some of them are physicians or nurses and have doctorates and other advanced degrees, positioning them as experts in alternative health and health science information, yet they exist on the fringes or are discredited by established medical and scientific communities. In alternative health groups, these figures become “their experts” for “their science” and the sources by which members check against the health science information from news sources, the government, or their health care providers.

Just as alternative health group members assess the (dis)trustworthiness of the health science information they encounter from the news or the government, they are also careful to assess the (dis)trustworthiness of information found on social media. Although this process varies from person to person, we identified some common themes and strategies. For instance, despite our participants’ differences in political values and ideological standpoints, almost all of the alternative health group members we interviewed explicitly stated that they value critical thinking. Indeed, some participants even see themselves as “researchers” or actively engaging in research about health and science information to assess its trustworthiness. This engenders a situation wherein definitions of what is considered true or false, trustworthy or distrustworthy, have shifted from being determined by “social mechanisms to individual preferences and preconceptions” (Andrejevic, 2020, p. 22) in line with the alternative epistemology or “their science” cultivated by alternative health groups. Group members may thus view information, generally, as trustworthy, not because the information itself is trustworthy, but because they trust in their own abilities to assess trustworthiness, especially when that information aligns with their personal experiences and concerns.

The interview participants said that when they are doubtful or skeptical of informational veracity, they go directly to “reputable sources,” “primary literature,” and “peer-reviewed journals.” For example, Celeste explained how she seeks multiple sources to find trustworthy information, “I’ve learned so much about [COVID-19] through different doctors online, summits, and through reading research, which I can share.” Our interview participants’ multiple references to terms and phrases like “primary sources” and “triangulating sources” demonstrate basic media literacy skills. And yet, when asked to define what they mean by primary sources, our participants rarely had specific answers. Some mentioned comparing multiple news sources to look for overlapping facts, and Belinda mentioned she occasionally checked international news to see what was said outside of the United States. However, on the whole, most participants referred to their research process as using something akin to—as Jerry articulated several times—“my best judgment” to discern which sources were truthful and which were not.

While participants in alternative health groups say they understand that they should not believe everything on social media, our participants overwhelmingly expressed confidence in their abilities to assess that information and are, therefore, seem trusting of that information overall. Our participants see themselves as less influenced by the “distrustworthy” health science information circulated across social media platforms, yet many expressed concern that that information may influence others. The media literacy practices and the confidence that many of our interview participants expressed in those practices indicate a third-person effect, wherein users see themselves as less affected by—and report greater competency to identify—different kinds of problematic information on platforms compared to other users (e.g., Corbu et al., 2020; Davison, 1983; Tsay-Vogel, 2016).

Finally, members often classify information sharing as a key component to assessing the (dis)trustworthiness of information and their participation in alternative health groups. Members typically share their personal experiences and request advice from group members, or they ask group members questions about different health science issues or for assessments on the (dis)trustworthiness of particular sources. For example, a Reddit poster asked for evidence of Pfizer’s corruption to make an “informed decision” on whether to vaccinate his family. The top comment, out of dozens of responses, detailed a web of “conflicts of interest” (supported by links to both official websites as well as alternative health and conspiracy websites), alleging how a former head of Pfizer is now part of Reuter’s fact-checking of vaccine safety, how a former FDA official is now on Pfizer’s board, and how Reuter’s Chief Operating Officer is now a member of Pfizer’s board, among other examples. By sharing information, members can bolster or defend their beliefs and demonstrate why “their science” is valid while health science is “corrupt” for the reasons listed earlier in this article.

Members say they also value the information and personal experiences shared by other members, and they like helping other members by sharing the information they “research” and their own experiences with other members’ questions. Phillip stated that he shares information in these spaces “to help people”; meanwhile, Samuel remarked that he joined his specific alternative health group “to bring science to alternative health.” Alternative health group members’ experiences—and anticipation of future experiences—sharing and receiving information show them that their alternative epistemology is a valued way of knowing or that personal experiences, shared concerns, and their “research” have epistemic capital among other alternative health group members.

Discussion, Implications, and Study Limitations

Our exploration suggests that alternative group members perceive health science information sources as (dis)trustworthy according to an alternative epistemology or “their science,” which accounts for their personal experiences, beliefs, worldviews or ideologies, contextual concerns, and other factors. Criticisms about health science news and conflicts of interest, lack of confidence in government decision-making and beliefs about the role of governments, and personal experiences with information, health care, and pharmaceutical interventions, among other things, ultimately shape distrust of health science. At the same time, members insist they otherwise trust science. Alternative health group members assess the (dis)trustworthiness of information and sources by engaging in their version of “research” through social media, search engines, and information sharing based on the alternative epistemology cultivated within the groups.

Like Tripodi’s (2022a) analysis of conservatives and right-wing propagandists, our data also suggest that the members of alternative health groups often engage in their own version of media literacy. Tripodi (2022a) suggests that “central to this media practice is the assumption that real truths . . . exist and can be discovered by doing your own research and ‘returning’ to the facts” (p. 74). The problem with this form of media literacy is that alternative health group members often check information against questionable or unreliable sources of information, such as through the websites or social media pages of alt-health influencers, anti-vaccine advocates, and other politically aligned public figures. Thus, in alternative health groups, a dynamic is created wherein the information shared by traditional sources of informational authority (e.g., science and health institutions, journalists at mainstream news organizations, governments) is checked for trustworthiness via figures who gain (financially or reputationally) from spreading alternative health or health mis/disinformation, the alternative health groups on Facebook and Reddit, and through algorithmically personalized searches on Google, which our interview participants generally see as a “neutral arbiter of trusted information” (Tripodi, 2022a, p. 103). This is problematic because, as users, we influence Google results by how we search (e.g., keywords used, search histories), meaning that Google and other search engines can lead to information consistent with our preferences, word choices, and previous behaviors rather than necessarily neutral and “trustworthy” information.

Therefore, the practices of engaging in their own research and applying their “best judgment” to the varying sources to which they are exposed ultimately define their perceptions of (dis)trustworthiness of health science information as a public understanding of science-as-trustworthy unless or until that science conflicts with their own experiences and concerns over our government, health, and news systems. Furthermore, our interview and observational data also draw attention to alternative health group members’ desire for more information and for more people and organizations to trust despite their skepticism and reasons for current distrust.

One limitation of our study is that it does not fully explore the technological affordances of Facebook or Reddit in terms of examining the differences between how Facebook and Reddit, as well as other social media platforms, may enable or constraint specific types of information sharing, community building, and cultivations of alternative epistemologies (see Marwick, 2018). In addition, there needs to be more examination of the platforms themselves (e.g., their moderation policies, their content amplification practices, etc.) and how their profit motivates shape the way they control information flows and exert profound influence over news and information production, distribution practices, and user encounters with news and information (Bennett & Livingston, 2018; Gillespie, 2018; Jack, 2019; Napoli, 2019; Pickard, 2020; Vaidhyanathan, 2018).

Our study also faces the usual limitations of most data gathering. Our interviews were collected not with random sampling but with voluntary participants, and although our approach to qualitative research demonstrates rigorous methods, we are still limited by a smaller sample—one that runs the risk of being dismissed as anecdotal in certain research circles. Nevertheless, our further research intends to address these limitations in various ways. To offer a quantitative approach, we developed a tertiary project, applying a survey based on these results and distributing it to a larger sample, including Internet users who are not members of alternative health groups. In the meantime, we suggest that our approach using interview data contextualized with observations of alternative health groups and subs still elucidates how participants in alternative health social media groups feel about the (dis)trustworthiness of different types of health science information, reasons for (dis)trusting different sources, and the ways by which they assess that (dis)trustworthiness.

Ultimately, to address the circulation of health science mis/disinformation across social media platforms, we need to better understand the people who are engaging with it or sharing it. We need to understand how and why people are ignoring, interpreting, and/or using information, and how those interpretations shape and are shaped by people’s “beliefs, opinions, and internal states of being” (Anderson, 2021, p. 57). Doing this importantly challenges simplistic assumptions about the “power of (false) media messages to cause irrational political behavior” (Anderson, 2021, p. 58), or in our case, the blurring of political and health behaviors. Within communities like alternative health groups, the information assessment and personal sharing practices cultivate an alternative epistemology that values and trusts “their science,” informed by their own experiences and contextual concerns that may contradict science more generally. We must explore these contradictions and the experiences, attitudes, thoughts, and intentions of social media users as they engage with alternative health, health science, and/or health mis/disinformation in significantly greater depth. In other words, we need to center the people participating in these kinds of spaces and better understand how and why their own and other people’s personal experiences and concerns hold so much epistemic value for assessing and accessing “their truth.”