The post @Conversation changers podcast: Trust, information and influence first appeared on Tina Purnat.

Reading these made me reflect on how belief in ivermectin has become a durable feature of the U.S. health information landscape. It also reminded me how limited the US institutional responses have been. This moment feels like a good opportunity to examine where the assumptions about ivermectin, as a problem of misinformation, have failed us. I think it’s a moment to consider what we might gain by stepping back and taking a systems view.

Because ivermectin belief isn’t a messaging problem. It’s a systems problem.

The problem isn’t just misinformation, it’s the system that sustains it

When ivermectin first exploded as a supposed COVID-19 treatment, many in public health jumped to respond. And for good reason: the science didn’t support it. Clinical trials didn’t show a benefit. People were self-medicating with veterinary versions of the drug, sometimes landing in the hospital from poisoning. Health departments needed to step in.

There were some reactions, like warnings from the FDA and CDC, corrections in the media, debunking videos, and public statements. Communication campaigns kicked into gear.

But the belief persisted. And in some places, it deepened.

Ivermectin didn’t fade like responders expected it to. It morphed, adapted, and it was no longer just a fringe remedy as it became symbolic. In the hands of figures like Joe Rogan and Mel Gibson, ivermectin became part of a broader story: about medical freedom, distrust in government, and the power of alternative paths. Mel Gibson’s January 2025 podcast clip, in which he claimed that ivermectin and fenbendazole cured his friends’ cancer, spread to millions in days. For many viewers, this wasn’t just a story about treatment, because it carried the story of truth and betrayal.

We’ve seen bills proposed to sell ivermectin over-the-counter. We’ve seen mothers form communities around wellness and “natural healing” narratives. We’ve seen people dismiss public health warnings and the institutions behind them.

The problem isn’t only about what people believe. It’s what those beliefs are doing for them, and what kind of system makes those beliefs feel like the best option.

When communication hits its limits

To be fair, public health communication has come a long way. Today’s practitioners understand that behavior doesn’t change with facts alone. They consider tone, context, emotion, and identity. They use audience research, human-centered design, behavioral insights.

But even so, we often default to a narrow frame: get the message right, get it to the right audience and at the right time, and then behavior changes.

We tell ourselves that better segmentation, precision, or tailored messaging will be enough to make the change. But too often, these efforts still operate within a linear logic, as if the problem is a knowledge gap and the solution is the right narrative or story.

What this misses is the systemic feedback that keeps beliefs like ivermectin alive long after the facts are clear.

That’s why I turned to systems thinking, because I’ve realized communications couldn’t do all the work alone. We needed to understand the system we were speaking into.

From lines to loops: What the system shows us

When I started mapping the ivermectin belief system using causal loop diagrams, two main reinforcing feedback loops stood out.

You can see them visualized in the loop diagram below, but I’ll walk through them here with examples.

The first loop is what I call the anecdote amplification loop.

This is the echo chamber of experience. Someone hears that ivermectin helped a neighbor, a cousin, or a celebrity. They try it. Maybe they were getting better already, or maybe it’s the placebo effect, but they feel better. They share that story online or at church or in their parenting group. Now more people believe in ivermectin, more people try it, and the cycle intensifies.

When Joe Rogan announced that he took ivermectin during COVID and recovered, millions took that as confirmation. Not because Rogan is a virologist, but because he’s a trusted voice in his circle and his personal story carried weight.

These stories accumulate in community spaces, creating a local reality that feels more trustworthy than results of any clinical trial. The absence of harm becomes proof of benefit. Dismissals by scientists or public health officials often just reinforce the sense that “they don’t understand people like us.”

The second loop is the distrust-defiance loop.

Here, the starting point is mistrust of government, of pharma, and of experts. That distrust pushes people toward alternative information channels: Telegram groups, YouTube shows, Substacks. These channels promote ivermectin as the suppressed cure. The more people engage with this narrative, the more it deepens their distrust in official information sources. That mistrust then becomes the frame through which they interpret all new information.

We saw this with Robert F. Kennedy Jr., who has publicly argued that ivermectin was being unfairly suppressed to protect pharmaceutical profits. For those already inclined to mistrust “the system,” this wasn’t a fringe theory. It was a perfectly logical explanation. And every time the FDA pushed back, it was seen not as science, but as censorship.

These loops explain why so many linear interventions have failed. When you don’t see or interrupt the loops, your fixes get absorbed and sometimes weaponized by the system itself.

The archetypes we’re reenacting

As I looked deeper, I realized that ivermectin belief also mirrors several classic systems archetypes, patterns of behavior that show up across complex systems.

• We’re stuck in Fixes That Fail when our corrections inadvertently reinforce the problem. A well-meaning debunking effort gets interpreted as more evidence of suppression. The more we insist, the more tightly the loop coils.
• We’re enacting Shifting the Burden when we rely on communication as the primary solution instead of addressing the deeper drivers, like lack of accessible care, or the trauma of past medical harm. We chase the symptom (belief in ivermectin) instead of the cause (systemic failure to provide trustworthy care).
• We see Limits to Growth when early success stories and adoption hit saturation, but the underlying dissatisfaction with the health system keeps demand alive. Even when evidence accumulates, belief doesn’t disappear, because the root conditions haven’t changed.
• And perhaps most striking is the Escalation dynamic: public health warnings increase; alternative media double down. Each side intensifies, trying to out-claim the other. The system polarizes further.

We can use these archetypes as signals and not just clever metaphors to explain things. They tell us that we need different kinds of interventions and different mental models to design them.

So where are the leverage points?

Donella Meadows identified leverage points in systems – places where small shifts can create significant, systemic change. Many of our current efforts sit at the low end of this scale: adjusting parameters, like what the message says, who delivers it, or how often it’s repeated.

In complex social systems, the most powerful changes often come not from forceful targeted messaging or awareness campaigns, but from altering the structures and feedback loops that sustain belief. Jay Forrester, the founder of system dynamics, argued that real leverage is usually counter-intuitive. It’s found in the flow of information, in the goals of systems, or in the mindsets and relationships that shape how people act.

In the ivermectin ecosystem, the most obvious strategies, like debunking, deplatforming, fact-checking, have done little to unwind the loops. But systems thinking helps us see deeper interventions.

If we take ivermectin seriously as a systemic challenge, we need to consider higher leverage points. Those are the ones that don’t just aim to correct individual beliefs, but help reshape the underlying system dynamics that sustain them.

• We need to shift information flows, not simply broadcasting “the truth,” but diversifying who gets to speak, whose experiences count, and what kinds of knowledge are trusted. Instead of national, top-down campaigns, imagine community-led health literacy circles or church-based health dialogues, where people like a local nurse or pastor co-host forums to help residents make sense of competing health claims. In these settings, questions are welcomed, not dismissed, and knowledge is co-created rather than delivered.
• We need to change the rules of the system, particularly the policies and incentives that enable misinformation to flourish. During the pandemic, some doctors and telehealth platforms profited from off-label ivermectin prescriptions. Regulatory boards and agencies can tighten accountability for commercial actors using deceptive marketing. At the same time, social media platforms can be pushed to refine algorithms so that searches for “ivermectin cure” surface nuanced, evidence-based content delivered by peers, not just officials.
• We should rethink the goals of our interventions. Are we trying to eliminate a false belief? Or are we trying to create an environment where people feel heard, respected, and supported in making health decisions so that future misinformation takes root less easily? A trust-building effort between rural health officials and MAHA-aligned community members won’t erase belief in ivermectin overnight, but instead it can open space for dialogue and shift long-term norms around who is trustworthy and why.
• We need to redesign health systems and product experiences so they generate their own reinforcing loops of trust and value. One of the reasons people turn to ivermectin is that it offers something they feel traditional healthcare doesn’t: accessibility, affordability, agency, or simply being taken seriously. If people have repeatedly experienced rushed, expensive, or dismissive care or if they’ve been excluded from early treatment options altogether, it’s not surprising that they might place more faith in peer-validated alternatives. The real leverage lies in offering credible, responsive alternatives before desperation and mistrust sets in. That might mean ensuring early care is available without judgment, or designing touchpoints where people feel listened to and empowered. Instead of trying to out-argue misinformation, we need to outcompete it by creating better, more meaningful health encounters that stick in memory and circulate through networks in their own stories of “this worked for me.”
• And at the highest level, we must challenge the paradigms that shape our work. What if we stopped assuming that public health’s authority is self-evident or that people should comply because we are right? What if we led with humility and relationship-building, acknowledging past harms and inviting participation? Instead of viewing belief in ivermectin as irrational, we might begin to see it as a rational response to a system that hasn’t shown up for people when they needed it.

Moving beyond communications

Let me be clear: I’m not against health communication approaches. They need to be complemented because they are critical but insufficient to address wicked public health problems. I’ve worked on improving communication campaigns to raise awareness on health topics. I know how vital they are. But when we treat communication as the main intervention, it’s easy to blame health communication when it fails to deliver, and we’re doing what systems thinkers call “shifting the burden.” Often, that can mean shifting the burden to the individual, and that is unfair and incorrect.

Ivermectin belief goes beyond failures to persuade otherwise. We should see it and other narratives as a social response to deeper failures of presence, care, and trust. People are reaching for something, anything, that feels responsive, respectful, and within reach and is meaningful to them.

So we can use systems thinking to help us design better messages and better systems. Systems that listen, adapt, andco-create with the people they serve.

If we’re willing to act on that, the options expand. We might invest in long-term community partnerships instead of short-term campaigns. We might train health workers in narrative facilitation in addition to health information delivery or interpersonal communication. We might redesign how policies are communicated along with paying attention to what they say.

We might, in other words, begin to earn the trust we wish we had.

What the ivermectin story reveals

We should see the persistence of ivermectin belief as a mirror. It reflects how people make sense of uncertainty when trust has eroded. It shows us how simple narratives can gain power in complex systems. And it challenges us to look at what’s said and why people are ready to hear it.

If we treat it only as a misinformation problem, we’ll keep running in circles while the social relationships and narratives shift norms and social dynamics.

But if we see it as a systems problem, like a set of reinforcing loops, structural incentives, and narrative gaps, then we might start doing things differently, because we’re finally seeing more of the whole.

PS: End note on systems thinking and digital ecology, if you want more:

I’ve written this as a reflection on ivermectin, but what I’m really suggesting is bigger: we need to apply systems thinking to how we understand information ecosystems, beyond channels, influencers or platforms.

Systems thinking can help us start seeing these environments differently. It invites us to pause and examine our assumptions, not only about what “works,” but about how people make meaning in complexity. It encourages us to move beyond simple fixes and become more comfortable working in nonlinear, adaptive ways.

This is especially important when we’re dealing with digital ecologies that vary across topics, platforms, and communities. What circulates in one group as “common sense” may be dismissed in another. The design challenge becomes about how do we minimize the reinforcement of problematic loops, and instead cultivate balancing loops that stabilize trust, shared meaning, and responsiveness?

Naive interventions in such complex systems can have counterproductive results, and practitioners need to use systems tools to anticipate those effects. Before launching another campaign, we should pause to simulate or map how that intervention might ripple through the ecosystem, and ideally understanding relationships and power, and using tools like causal loop diagrams to identify potential feedback effects before they take hold.

That’s the kind of systems literacy we need more of in public health. It doesn’t promise control of health behaviors. But it does offer orientation toward humility, toward learning, and toward designing with, rather than against, the complexity we face.

Haynes, A., Rychetnik, L., Finegood, D. et al. Applying systems thinking to knowledge mobilisation in public health. Health Res Policy Sys 18, 134 (2020).

Lee BY, Greene D, Scannell SA, McLaughlin C, Martinez MF, Heneghan JL, Chin KL, Zheng X, Li R, Lindenfeld L, Bartsch SM. The Need for Systems Approaches for Precision Communications in Public Health. J Health Commun. 2023 Apr 7;28(sup1):13-24.

Ammara, U., Bukhari, H., & Qadir, J. (2020). Analyzing Misinformation Through The Lens of Systems Thinking. Conference for Truth and Trust Online.

Márton, A. (2021). Steps toward a digital ecology: ecological principles for the study of digital ecosystems. Journal of Information Technology, 37(3), 250-265.

The post Why the ivermectin myth persists, and what It teaches us about systems, power, and public health first appeared on Tina Purnat.

It was a pleasure to meet the participants and to discuss with the chair of the panel, K Vish Viswanath and the other panelist, Roberta Braga.

Here are my thoughts on cancer, misinformation, and information ecosystems.

A Lesson from History: The 1957 FDA Warning

Back in 1957, the FDA took a bold stand against fraudulent cancer “cures” by posting the above warning posters in post offices. These posters specifically targeted products like Harry Hoxsey’s herb extract, which was promoted as a miracle cure despite having no scientific basis. They warned consumers that such treatments were unregulated, dangerous, and ineffective, emphasizing that the claims made by fraudulent marketers exploited the desperation of those facing a cancer diagnosis.

The logic was straightforward: post offices were common distribution points for these miracle cure products, so placing warnings there directly intercepted the consumers at the moment they were most vulnerable. Today, the same profiteering incentives and exploitation of patients’ fears remain, only now they are amplified by digital platforms and targeted online advertisements.

Cancer and model disease for studying impacts of health misinformation

Some researchers argue that cancer is an ideal model for studying health misinformation because its complexity and measurable outcomes create a “real-world laboratory” for examining the effects of false information on patient behavior and survival. Swire-Thompson and Johnson have recently argued that the high prevalence of cancer, its myriad treatment options, and the clear, often dire, consequences of delayed or inappropriate care offer unique opportunities to assess how misinformation influences treatment adherence and mortality. This disease context exposes the financial incentives driving deceptive practices and highlights how misinformation can distort trust in conventional medical advice, which is critical area for designing effective interventions that promote evidence-based care.

The evolving digital landscape of cancer misinformation

Today’s world of social media, online search, mobile apps, and internet platforms has transformed how patients access health information. Digital platforms make it easier than ever to order and access alternative treatments. However, they also amplify the low-quality and deceptive narratives by exploiting cognitive overload and vulnerabilities of cancer patients or those with confusing screening results.

• Digital advertising & profit motive: Alternative cancer clinics are spending millions (over $15 million from 2012 to 2023) on Google ads designed to mimic sensitive patient information queries, steering vulnerable individuals toward unproven treatments (Zenone et al., 2024).
• Influencers & shifting expertise: In our digital era, traditional medical expertise is being redefined. Patient and wellness influencers, celebrities (see discussions over claims by Elle Macpherson and Mel Gibson), along with “medical freedom” proponents now command significant attention, often blurring the lines between trusted health advice and profit-driven misinformation.
• Emotional Narratives: Viral stories promise quick, easy fixes, fueling hope in individuals overwhelmed by cancer diagnoses and treatment decisions. If you haven’t watched Apple Cider Vinegar on Netflix, I recommend it. It tells the story of Belle Gibson, an online influencer who faked her cancer diagnosis to promote alternative cures. Information can be easily distorted nowadays.

Understanding the patient’s journey and the information ecosystem that wraps around them

When we talk about misinformation, we often focus on the sensational viral posts – the “miracle cures” and scandalous tales like that of Belle Gibson. But focusing solely on these narratives risks ignoring the broader ecosystem of health information, which includes:

For one, not every piece of content reaches all patients equally. Patients are influenced by a mix of personal contacts, community voices, and digital media, which all play a role in how they interpret their health options.

The journey from receiving a cancer screening to making treatment decisions is complex. On the left side of this patient journey, individuals face a barrage of digital content—alternative clinic ads, misleading mobile apps, and unmoderated social media posts—that can overwhelm and confuse. On the right, even when patients finally access healthcare services, many hesitate to discuss what they’ve seen online for fear of judgment or dismissal.

Consider that these pervasive influences bombard individual patients across all levels of the socioecological model, including the individual, community, healthcare, social, and information ecosystem levels. I only had the time to discuss strategies at the interpersonal level; the key takeaway is that adopting this type of patient-centric approach to health information seeking and use broadens our perspective on improving both health communication and care delivery.

Example at interpersonal level: What clinicians can do

Right-hand side of the journey: Interpersonal communication and decision support

• Engage patients with open-ended questions about what they’ve been reading and where they are getting their health information. This approach creates a safe space where patients feel comfortable discussing online content.
• Consider asking how patients are researching cancer on their own, what digital spaces they are visiting, what mobile apps they might be using, and whether they want to find community online.
• For patients seeking community, they can be directed to reputable community support groups on social media platforms and in person, where they can connect with others experiencing similar challenges and questions.
• Encourage the use of validated decision-support tools to assist patients in evaluating treatment options. For instance, a recent systematic review emphasizes that interactive digital decision aids can help patients better understand risks and benefits, leading to more informed choices.
• Offer ways for patients to connect with you and care team between appointments.

Left-hand side of the journey: Digital spaces

• Ensure your organization’s website consistently features high-quality, evidence-based content that patients can trust as a reliable resource.
• Invest in social media training and practice effective digital communication to engage proactively with the public.
• Stay available as a trusted resource for journalists and fact-checkers, promptly answering questions and offering expert insights.
• Support initiatives by professional associations and organizational campaigns dedicated to addressing cancer misinformation and responding to public queries.
• Actively promote partnerships with patient support communities to help disseminate accurate information and foster trust in evidence-based care.

The post Cancer misinformation: From 1957 FDA warnings to today’s digital Wild West first appeared on Tina Purnat.

Other speakers in the webinar were Nandita Thatte, DrPH , Dr James Kiarie , Åsa Nihlén , Chelsea Polis, PhD, Innocent Grant , Amanda Cordova-Gomez., PhD. and Tigest Tamrat.

The challenge of sexual and reproductive health misinformation

Misinformation about sexual and reproductive health is spreading quickly online. This false information is not just a nuisance. It shapes health outcomes, tilts decision-making, and even influences laws and policies. Our research covered 254 studies and articles, published between January 2019 and December 2024. We used rigorous database searches and explored grey literature from reliable sources. Our aim was to understand how digital SRHR misinformation affects individuals, communities, health workers, and policymakers.

The data shows that false information directly impacts everyday decisions. People base their health choices on what they read online—often without realizing the source may be untrustworthy. This gap leaves them vulnerable to poor-quality health advice.

Thinking about SRH misinformation through human rights lens

We framed our study using key human rights principles. These include equality and non-discrimination; availability, accessibility, acceptability, and quality; informed decision-making; privacy and confidentiality; participation and inclusion; and accountability. Here’s what we found:

• Equality and non-discrimination: False narratives limit informed choices. They add to fear and stigma. For example, misleading information about pregnancy and LGBTQ+ health reinforces harmful biases. This not only makes people feel excluded but also prevents them from accessing the information they truly need.
• Availability, Accessibility, Acceptability, and Quality: When low-quality apps and misleading online content replace trusted advice, people suffer. Many menstrual and fertility tracking apps promise accurate data but are not backed by rigorous evidence. In places where services are scarce, such apps become a desperate resource. The result is a gap between what users expect and the reality of the information provided.
• Informed decision-making: Every individual deserves access to clear, evidence-based information. Instead, misinformation steers people toward decisions based on bias and incomplete facts. When false information about fertility treatments or abortion safety circulates, it skews the decision-making process and can even lead to harmful health outcomes.
• Privacy and confidentiality: Privacy is a major concern. Users worry about how menstrual cycle data and other sensitive details might be tracked. Many fear that their information could be sold for advertising or even used against them in regions with strict reproductive laws. This worry can prevent people from seeking the help they need.
• Participation and inclusion: Digital misinformation silences marginalized voices. When inaccurate and stigmatizing content dominates online discussions, those most affected by SRHR issues often withdraw from the conversation. This lack of participation hinders the development of inclusive policies that truly represent everyone’s needs.
• Accountability: When misinformation gains ground, accountability weakens. False narratives can become codified into law. For instance, restrictive abortion laws sometimes rest on misrepresented statistics. When policymakers rely on inaccurate data, efforts to reform or improve services are stifled.

Real-world examples

I shared several (not exhaustive) concrete examples from our research to illustrate these points:

An example of a complex issue are fertility trackers and menstrual cycle apps that are rapidly gaining popularity, but they come with complex challenges that go far beyond simple technology use. Many apps lack evidence-based references and provide unreliable algorithmic predictions, contributing to misinformation about reproductive risks. In the UK, mistrust in hormonal contraception drives some women to adopt these tools, whereas in Brazil, limited access to health services and contraceptives fuels their reliance. In the Netherlands, 77% of women have accessed web sites for health information and 61% have used pregnancy and childbirth apps, even though digital sources were perceived as less trustworthy and less useful compared to health professionals as health information sources. Healthcare workers also often distrust the accuracy of these apps themselves and lack the skills to assess their credibility, while users worry about data privacy, particularly in settings where reproductive healthcare may face legal restrictions.

Then, online health information seeking follows a clear gendered pattern, with most of the reviewed research on SRH misinformation centered on women’s health, LGBTQ+ topics, or youth. Much less attention has been paid to how misinformation impacts men’s health. Meanwhile, online profiteers exploit these patterns through ads, deceptive websites, and questionable direct-to-consumer products that cater to gender-specific needs, beliefs, and identities. You’ll see above, for example, that nonevidence-based women’s health products are a lucrative business under the flag of girl power. And there are plenty of men’s health clinics that do this type of direct-to-consumer marketing for dubious treatments for men.

While improving digital literacy helps people scrutinize dubious claims, health systems also bear responsibility. Individuals often turn to unreliable sources because they fear or feel judged or misunderstood by their healthcare providers or health workers. There’s a pressing need for stronger consumer protections since wellness influencers and commercial clinics escape the professional accountability demanded and expected in traditional medical settings.

Healthcare professionals traditionally rank among the most trusted sources of health information (see US, several other countries globally). However, younger generations now turn to an abundance of online alternatives like TikTok or YouTube where influencers with no medical qualifications can be just as, if not more, persuasive. This shift undermines the monopoly that healthcare workers once held in guiding health decisions. Studies show that videos made by health professionals often reach smaller audiences than those from popular influencers. Meanwhile, providers receive little organizational backing or training for engaging in online discussions. They’re expected to adapt, absorb new responsibilities, and expose themselves to greater risks, all without a comprehensive support system or amendments to occupational health and safety policies.

The absence of information can be just as harmful as the presence of misinformation. Recent reports show that misinformation is increasingly woven into policies and laws, reinforcing false narratives and legitimizing them. In the United States and several African countries, it has been reported that legislative or strategic litigation tactics incorporate misinformation and nonvidence-based practices into official frameworks, which amplifies and normalizes these misleading claims.

At the same time, major internet platforms apply inconsistent content moderation that can block or throttle accurate SRHR information in certain regions or languages, while allowing harmful misinformation elsewhere (see 2025 article, and 2024 report). These twin forces reshape online spaces and heighten disparities in digital information. Addressing this requires filling information voids with accessible, localized, and discussion-friendly resources, especially where credible material and services are missing or heavily restricted.

What this means for us

SRHR misinformation is not an isolated phenomenon; it reflects deep, systemic asymmetries in how people access health information and care. The big takeaway from our scoping review is that improving access to quality health information and care will go a long way toward mitigating the harms of misinformation. However, simply chasing after individual misinformation narratives and improving communications through tailored and culturally appropriate delivery is not enough. Sexual and reproductive health is deeply intertwined with individual, community, and social identities and values, which means that addressing it requires systemic, people-centered solutions.

We must apply a human rights lens when strengthening our systems. This approach demands new partnerships, the creation of healthier digital spaces where accurate SRHR information is freely available and openly discussed, and empowered healthcare providers and systems that are better equipped to handle the inevitable impact of the digital information ecosystem.

To protect and promote human rights in sexual and reproductive health, we must align our policies and practices with the real-world needs of people. This means pushing for evidence-based communication, better digital literacy, and stronger safeguards for privacy. When accurate information is delivered hand in hand with quality services, support and products that people need, we can reduce the detrimental power of misinformation.

The post When misinformation erodes human rights: Sexual and reproductive health and rights in the digital age first appeared on Tina Purnat.

Those of us who work in health information and digital information environment, know that it is the design of the platforms that propagates narratives that can harm health and exploit consumers through fraud, scams and profiteering.

For a nuanced discussion of the changes underway, I recommend you listen to the recent podcast hosted by Kara Swisher. She interviews three of the original architects of trust and safety on social media— Del Harvey (former Twitter Head of Trust & Safety), Dave Willner (former Facebook Head of Content Policy), and Nicole Wong (former VP and Deputy General Counsel at Google)—and they discuss the evolution and unraveling of content moderation.

Their conversation explains that the goal of trust and safety teams has always been to design safer information environments from the start—not just police the chaos after it happens. (Here’s my discussion of the situation from two years ago.)

From guardrails to free-for-all

The conversation in the podcast explains that Meta’s recent decision to curtail fact-checking and reduce ranking interventions for misinformation is the latest step in a long retreat from design and actions in support of product safety. While some interpret this as a return to “free speech,” the reality is that these decisions deliberately create a more dangerous, more chaotic, and more manipulatable online space.

The experts on the podcast pointed out that Meta’s move was not just about reducing fact-checking—it involved:

• Turning off ranking interventions for misinformation, allowing harmful content to spread unchecked.
• Scaling back hate speech enforcement, particularly against LGBTQ+ individuals, immigrants, and women.
• Reframing moderation as “censorship” in language meant to appease political interests.

These shifts reflect a larger trend in which tech companies are deliberately loosening their grip on content moderation not because it is ineffective, but because it is inconvenient—inconvenient to profit, inconvenient to power, and inconvenient to those who want to exploit these platforms to manipulate public discourse.

The false choice of “free speech vs. moderation”

One of the most important takeaways from the discussion was that moderation is not censorship—it is a necessary function of maintaining any public space. The panelists compared platforms like LinkedIn and Pinterest (which have clear boundaries about the kind of discourse they foster) with X (formerly Twitter) and Meta’s platforms, which once sought to be everything to everyone and now struggle under the weight of their own lack of purpose.

Platforms that fail to define their own boundaries become battlegrounds for exploitation—whether by bad actors spreading disinformation, organized harassment campaigns like Gamergate (all the way back in 2014), or, in the worst cases, incitement to real-world violence, such as the genocide in Myanmar fueled by Facebook’s unchecked algorithmic amplification of hate speech.

The bigger picture: Who benefits from the chaos?

The conversation touched on how figures like Elon Musk and Donald Trump have aligned themselves with the push to dismantle content moderation—not out of principle, but out of a strategic desire to control the information environment. By turning platforms into free-for-all spaces where the loudest and most aggressive voices dominate, they ensure that those who are most organized in their disinformation efforts gain the upper hand.

But even as these platforms back away from trust and safety, the speakers noted that the demand for it will not disappear. As Dave Willner put it:

“People are always going to get into conflicts online, and they will demand some resolution. The question is just how stupid the journey has to be before we get back to that realization.”

Why this matters for health

More people in public health now recognize that social media and the digital information ecosystem are harming health, but the conversation remains superficial, often focused on content moderation, fact-checking, and individual interventions like social inoculation. Improving media, science, digital, and health literacy education or age-gating use of social media or apps are approaches that are more comprehensive but also need to be complemented.

Public health cannot stay reactive in this matter because bad content and misinformation aren’t the only issue. People don’t just avoid care or seek online health advice over talking to providers because of poor moderation or content online. We also fail to ensure that credible, authentic health information is available when and where people need it.

While some argue that public health should get better at using social media’s engagement-driven tools to counter misinformation and communicate health and science, in my mind public health becoming a better influencer isn’t enough for us to ensure better use of health information and healthy decisions. We must push for deeper change—not just in platform design and regulation, but also in how health information is integrated into the digital spaces where real discussions about health, wellness, and well-being happen. If public health stays focused only on fighting bad content or on getting louder and better at leveraging ad-based and influencer-supported engagement, we lose the bigger battle—reshaping the digital ecosystem so that reliable health information is not just available but trusted and accessible when it matters most.

What comes next?

In the podcast, the guests discuss that there’s a growing push for regulation—particularly in Europe and Australia—but in the U.S., much of the conversation around online safety has been hijacked by bad-faith actors framing moderation as political bias. Meanwhile, as public trust in platforms erodes and the platforms are splintering, people retreat into smaller, private spaces like group chats or decentralized platforms like BlueSky.

But as the guests pointed out, architecture matters. The way platforms are designed determines the kind of speech they foster. The real battle is not about whether we should “censor” content—it is about whether we are willing to build digital spaces that do not incentivize harm in the first place.

As Meta, X, and other platforms pull back from moderation, the question is not just whether their platforms will become more toxic—it’s whether the rest of us will critically examine how design choices shape our information environment and push for better ones.

Because in the end, letting harmful content run wild online isn’t a defense of free speech. It’s a design failure. And that failure is a choice.

The post The illusion of safety: How Meta and other platforms are dismantling Trust & Safety online first appeared on Tina Purnat.

The consequences are huge. Think about health, where people need solid, reliable information to make safe choices. But in a digital landscape crowded with extreme voices, authentic guidance has to shout to be heard. Add in technologies like ChatGPT, where seemingly credible but low-quality information can slip into everyday conversations and personalized ads with alarming ease. It’s not just influencing curious consumers; it’s starting to shape what policymakers, companies, and public institutions think, too.

When virtual becomes fatal

Consider the heartbreaking story of a 14-year-old boy from Florida who developed an intense emotional connection with an AI chatbot named “Dany,” modeled after a character from “Game of Thrones.” In a world that felt increasingly unsupportive and contradictory to his needs, the boy found validation and companionship in this digital relationship, isolating him from real-life connections. Tragically, after he shared suicidal thoughts, the chatbot responded in ways that appeared to encourage his intentions, leading him to take his life shortly after a final exchange with “Dany.”

Young people, especially boys, are growing up in a world full of contradictions. They’re told to be resilient, yet they often encounter environments that feel unresponsive to their needs. They’re immersed in an online world that bombards them with messages about success, connection, and belonging but rarely offers real support for the unique challenges they face. What kind of society are we building when young people feel more connected to AI-driven relationships than to the real people around them?

The reality is, the digital media ecosystem often amplifies these divides. It creates a world where certain needs, identities, or struggles are glorified while others are marginalized, leaving young people feeling alienated. In a society where digital interactions often replace genuine connection, we risk creating a generation that feels more distant from the communities they live in and the institutions meant to protect them.

Why communication-first misses the point

When people start ignoring health recommendations or rebelling against public guidelines, the instinct is to counter it with more messaging and more engagement. “Wash your hands!” “Mask up!” “Choose healthier foods!” But that messaging often misses the mark. It assumes that what people need is to be told more. But we’re forgetting one crucial fact: people don’t act because they’re simply told to even if it’s in fun and tailored ways; they act when something resonates deeply with them and reflects their experience.

When people are going through what feels like a personal crisis—financial, health-related, or existential—empty slogans or reminders from “the system” just don’t cut it. People can’t feed on hope forever. They need to see real steps forward. For many, ignoring public health guidelines or lashing out against civic or social norms is a reaction to feeling betrayed by the very structures that say they are helping them. It’s personal. It’s a way of pushing back against a system they see as an “other.” When people lose trust in the system, when they feel unseen or unrepresented, they’ll look elsewhere for guidance and feeling of community. And often, that guidance comes from sources that tell them exactly what they want to hear, fueling divisiveness rather than unity.

The ad-driven information ecosystem: Why trust is hard to find

Our ad-based digital world isn’t helping. Social media algorithms, built to maximize engagement, prioritize extreme content over nuanced truth. When was the last time you saw a quiet, balanced post go viral? We’ve created a game board where only the loudest voices thrive, leaving crucial health information buried under a pile of clickbait and conspiracy.

Our ad-driven world turns every click and search into a data point that shapes what we see next. Look up a health symptom, and suddenly you’re targeted with ads for treatments, supplements, and health programs—even when you’re logged into a patient portal. Behind the scenes, companies buy and sell this data, building profiles from our digital lives that influence the services we’re offered and the products pitched to us. This constant data exchange turns our online actions into commodities, feeding a profit-driven machine that’s always watching.

In this environment, trust in authoritative information is at rock-bottom. When people feel like the system has failed them—be it the healthcare system, economy, or even their local community—it’s easier to embrace an oppositional stance than a supportive one. It’s hard to convince someone that handwashing or climate action matters if every source around them says otherwise—or worse, implies it’s all a ploy by an untrustworthy system. When public health becomes a game for the most sensational voices, the idea of collective welfare starts to feel abstract, even irrelevant.

Enter AI: ChatGPT and the era of confidently delivered synthetic information

Now, imagine that scenario with generative AI like ChatGPT thrown into the mix. AI has the power to deliver information with a level of confidence and polish that can fool even savvy users. People tend to trust information that sounds authoritative, especially if it’s on their screen. But with ChatGPT, low-quality or even flat-out incorrect info can appear incredibly trustworthy. And this isn’t just an issue for consumers—flawed perceptions and insights can work their way into group dynamics, corporate decisions, government policies, and even public health planning.

As AI tools start to influence larger systems, we’re looking at an ecosystem where misleading, low quality synthethic information isn’t just a risk; it’s built into the process. Decisions are starting to be made based on algorithms that may not fully understand the stakes. The results could be serious missteps in health policy, business strategy, and public trust.

Reframing our approach: From messaging to meaningful impact

The deeper problem of the public health, economic and social system? We’ve drifted away from actually serving people and making their lives better. We’ve become fixated on identifying communication strategies: What should we say? Who do we need to reach? Messaging is fast, easier, and simpler to implement than making long-term changes in people’s everyday experiences, but if we’re not addressing real needs, even the best messaging won’t resonate. Sometimes people don’t need more awareness, ads or campaigns; they need meaningful actions that address the challenges they face daily.

If we’re going to rebuild trust and foster real cohesion, we need to flip the script. Instead of asking, What do we need to say? We should start with, Who are we serving? What do they need? How can we deliver real, tangible benefits that improve their lives? The goal should be to create services, programs, and coalitions that genuinely help people feel better supported. Once those are in place, then we can develop communication to connect people with these resources. When people see real action and experience positive changes in their own lives, they’ll engage with the messaging that supports it.

In an era of “faked-up” influencers and sensationalized content, the most revolutionary thing we can do is focus on making real life better. People don’t change actions because they’re told to; they change when they feel valued and connected. It’s time to build an ecosystem that prioritizes truth, impact, and long-term benefit over quick, attention-grabbing noise. By starting with service and ending with supportive communication, we have a chance to rebuild the trust that’s been lost.

Readings: Some recent articles you might want to put on your reading list

Shh, ChatGPT. That’s a Secret. Your chatbot transcripts may be a gold mine for AI companies. (The Atlantic)

The Costs of Targeted Advertising on Children and Mental Health (Think Global Health)

Nebraska DHHS issues health alert for ads with ‘incorrect and misleading information’ about abortion law (KETV)

Artificial Intelligence Has Come for Our…Beauty Pageants? (Glamour)

How the ‘Miss AI’ Beauty Pageant, Made Up of AI-Generated Women, Is Dividing Opinion (Time)

Growing Apart: Understanding and addressing the business ramifications of social polarization. BCG Global.

AI Chatbots for Mental Health: Opportunities and Limitations (Psychology today)

AI Chatbots in Digital Mental Health (MDPI)

The Impact of AI in the Mental Health Field (Psychology today)

AI is changing every aspect of psychology. Here’s what to watch for (APA)

The post The rise of the “Faked-Up” information world: Why we’re tuning out the collective first appeared on Tina Purnat.

The recent hurricane response described in The Atlantic (see Charlie Warzel’s I’m running out of ways to explain how bad this is) illustrates a profound breakdown of trust and information. Emergency responders, battling both the storm and misinformation, faced physical threats as conspiracy theories took hold in communities, stoking fear and distrust. The chaotic spread of falsehoods about government conspiracies and weather manipulation exposed just how vulnerable some populations are to misinformation. When trust in emergency and health responders collapses in real-time, it becomes nearly impossible to correct narratives or restore faith in the response while the responders are working hard to help the affected communities.

This breakdown of trust reveals that the layers of misinformation are deeply entrenched by prior experiences, information bubbles, and shared beliefs and world views in communities. By the time a crisis hits, communities make sense of circulating information about the response through their own worldview lens, making it difficult to communicate facts about the response.

This scenario highlights the urgent need to build resilient communities—ones that can withstand the barrage of misinformation before and during emergencies, especially when information ecosystems break due to infrastructure and connectivity failures. Rather than reacting in the heat of a crisis, we must proactively foster trust, improve information ecosystems, and build digital literacy so that communities can be prepared, informed, and united in the face of misinformation.

Here’s what a community resilient to misinformation would look like in the context of health emergencies and the key steps we can take to support and develop these critical systems.

1. Easy access to quality health information

No strategy can succeed if credible, accurate health information isn’t readily available. During COVID-19, even the most well-crafted and wide-reaching campaigns struggled to shift vaccine hesitancy because they raised more questions than they answered. When people can’t easily find reliable information from trusted sources, or have a negative experience with a healthcare provider, all the outreach in the world won’t inspire people to take action. Access to accurate, credible health information must be the foundation for any resilient community.

2. High levels of health literacy across the life-course

A community resilient to misinformation nurtures health literacy across the entire population, from childhood through old age. Health literacy isn’t just about understanding the facts and health information; it’s about applying that understanding in real life and critically evaluating new health information. When people can interpret health information effectively, they are better equipped to make informed decisions, whether about vaccines or navigating a new health crisis.

3. Knowing where to find credible, accurate health information

Beyond just institutions and influencers, a resilient community is one where health information is discussed in various social spaces, both within and outside the healthcare system. This connectedness enables people to share, validate, and interpret health information in ways that align with their cultural and social experiences. Social networks, both online and offline, act as valuable channels for distributing reliable information, creating a network of trust and credibility that misinformation struggles to penetrate.

4. Sharing and remixing health information

An indicator that health communication has resonated with the community is when people start to mirror and remix the messages. During COVID-19, many social media users created funny, engaging content promoting vaccines and public health messages in ways that felt authentic to their community—without using official logos or government language. This grassroots adaptation of health information shows that the message has not only been received but also embraced and repackaged in a way that is culturally relevant and engaging.

5. Digital literacy and active participation of individuals and health workers

Digital literacy goes beyond the ability to spot misinformation. It also includes understanding how to navigate the broader information ecosystem, protect personal privacy, and engage in discussions about health information in a safe and constructive manner. In a resilient community, people know how to search for, consume, and share health information responsibly, supporting one another in identifying misinformation while also addressing online harassment or misinformation attacks in real-time.

6. Community norms that promote healthy behaviors

Social norms that encourage health-promoting behaviors are a critical defense against misinformation. In a resilient community, behaviors like getting vaccinated or following public health guidelines are woven into the social fabric. These norms make it harder for misinformation that contradicts these actions to take hold, as individuals are influenced by the positive behaviors of those around them.

7. Trust in health service delivery, products, health guidance, and health workers

Trust is the cornerstone of a resilient health system. When communities trust their health services, products, and healthcare providers, they are far more likely to follow guidance, receive vaccinations, or comply with public health and social measures. Building and maintaining this trust requires transparency, responsive communication, and a demonstrated commitment to community well-being. Without trust, even the most well-intentioned public health campaigns will struggle to make an impact.

8. Sharing positive health experiences

A resilient community doesn’t just follow health advice—they share their positive health experiences with others, creating a ripple effect of trust and confidence. When individuals talk about how vaccines, treatments, or public health and social measures have benefited them, they provide powerful counter-narratives to misinformation. These personal stories help to reinforce the value of evidence-based health practices and can inspire others to take similar actions.

Withstanding shocks and maintaining trust

Communities resilient to misinformation are also better able to withstand shocks—whether that’s an emergency, a new health threat, or vaccine-related incidents that may erode public trust. These communities rely on their strong information networks, high levels of health literacy, and trust in health systems to navigate uncertainty. By fostering social norms that support health and building a culture of informed, critical engagement, resilient communities can maintain their trust in health services, even in the face of crises or disinformation campaigns.

It’s also important to note what it truly takes to build resilience

Resilient communities cannot be built through paternalistic approaches by health authorities. Instead, they require deep engagement with the community, creating spaces where people feel heard, valued, and understood. Trust is built through the consistent presence of social, health, and other essential services that reinforce people’s confidence in their government, health workers, and emergency responders. It’s this trust, earned through collaboration and transparency, that forms the backbone of a community’s resilience against misinformation.

We can start by asking people in noncrisis periods, “Do you have everything you need to live a healthy, happy life in your community?” listening to their responses and then designing and delivery social, health, and other services that meet community member needs.

Best way to build trust in the government and health authorities? Reflect on what it means to be trustworthy and then act on the learning.

Co

The post What does a community resilient to misinformation and infodemics look like? first appeared on Tina Purnat.

Vaccine demand promotion is more than just about boosting confidence in vaccines. It’s about implementing a broad set of strategies that address the behavioral and social drivers behind vaccination decisions. From community outreach to social marketing and tailored health communication, from suporting health worker confidence in vaccines and improving quality conversaiton about vaccines through interpersonal communication, to ensuring positive vaccination experiences, the approaches are as diverse as the challenges they aim to solve.

But what does this mean for vaccine demand research? Behavioral and social drivers of vaccine demand require different interventions across all levels of society. While researchers often focus on a specific intervention within their area of expertise, public health practitioners are tasked with the enormous challenge of creating a comprehensive health program that addresses vaccine demand among high-priority populations, tackles broader issues of vaccine hesitancy, and does all of this within the constraints of limited budgets, high staff turnover, and numerous political and institutional barriers. Practitioners have to problem-solve on the fly, navigating these obstacles to deliver the best possible program.

“evidence-informed” is not a dirty word

Between scientists and policymakers, there can sometimes be confusion between “evidence-based medicine” and “evidence-informed policy.” The latter doesn’t mean policies are less grounded in evidence. Rather, it means policy decisions incorporate evidence alongside other factors like resource constraints, competing priorities, expert insights from practitioners, gaps in available data, and even the political climate. While (especially quantitative) researchers seek to find “the facts that characterize the truth,” policymakers need to act quickly, often making decisions in the face of uncertainty, but always with the public’s well-being at heart.

Different perceptions of what makes research useful

One of my own key takeaways from the summit was the recognition of how differently researchers and practitioners perceive what makes research useful or actionable in the field or for policy. Public health practitioners—whether in ministries, health facilities, or community organizations—are often understaffed and overburdened. For research to truly serve them, it must directly address the pressing issues they face and offer practical solutions. Whether it’s providing data for decision-making, contributing to skill-building, or offering evidence that can be fed back to donors or supervisors, research needs to bring tangible value.

Do we understand what makes an intervention affordable, scalable, implementable, and acceptable?

I think that regardless of what type of research design they use, researchers need to understand the operational, capacity, and political context in which they are doing their research and evaluating their interventions—and document this context when reporting on the results. How else can we even begin to discuss what is needed to understand whether tested interventions can scale, whether they are affordable to implement, and whether they are acceptable in different settings? This kind of reflection is key to ensuring that interventions don’t just work in theory but can be adapted and sustained in real-world environments where resources are limited and demands on practitioners who need to implement them are immense. Without this contextual understanding, even the most promising intervention risks being impractical for the settings that need it most.

Tension between the business of research and the business of public health

A more radical approach to doing research serves the needs of public health practice and policy is one where researchers would design implementation and evaluation studies to directly serve the current needs of immunization programs. In theory, this would be a powerful way to align research with the operational realities on the ground, making it immediately actionable for public health programs (implementation research, anyone?). However, in reality, this is rarely achievable. It often clashes with current funding models, which prioritize academic independence and long-term research goals, and with university systems that require researchers to focus on publishing and meeting academic metrics for promotion. This disconnect highlights the structural challenges that prevent research from being fully integrated into public health practice in the most immediate and practical ways.

The trap of research partnerships to reproducibility and scalability

Research is often too slow or not reproducible because it relies heavily on specific partnerships to achieve its goals. These partnerships, while valuable, can limit the scalability and timeliness of research outcomes. The reliance on select collaborations can lead to delays or challenges in replicating the approaches in other contexts or regions, making it harder for practitioners to apply research-based interventions swiftly or across broader geographies. To serve public health better, we need to create more flexible, scalable research models that can adapt quickly to different contexts and allow findings to be generalized, transferred and implemented without being overly dependent on specific partnerships.

Are we making space for local researchers?

When it comes to international research collaborations, particularly between high-income and low- or middle-income countries, there must also be an intentional focus on ensuring equity and sustainability. Are high-income country researchers mindful and self-reflective of the power dynamics in these partnerships? Are they ensuring that their local partners benefit in a way that strengthens their decision-making capacity and builds their research expertise for future projects?

The bottom line…

At the end of the day, the true success of research isn’t just measured by publications or findings. It’s about how well it helps those on the ground—health practitioners and policymakers—do their jobs better, faster, and more effectively. Vaccine demand research, in particular, must be adaptable, interdisciplinary, and mindful of the pressures on those implementing public health programs. The key question for the research community remains: How can they better support public health professionals, ensuring that the findings we produce are not only relevant but also actionable in the real-world environments they navigate daily?

The post From Research to Reality: Aligning Vaccine Demand Studies with Public Health Needs first appeared on Tina Purnat.

Although these are two different outbreaks that affect different populations in different geographies, the recent WHO PHEIC does not distinguish between these Clades as both are outbreaks that need effective responses. However, in media and social media, there is discordance in accurately talking about the current outbreak when choosing appropriate images and examples to educate the public.

Below are three examples of headlines that don’t match the accompanying image. This is a problem because people associate pictures with the disease and may draw incorrect conclusions about risk to their own health.

Using images from the past and out of context

For example, in this first article, although it is laudable to avoid using pictures of those affected by mpox in stigmatizing ways, this article used a picture of men standing in line in the US from the 2022 outbreak. This is not an accurate representation of the current outbreak in Africa.

Using non-informative images

In this second example, the article describes how the Kenyan government is encouraging people not to share pictures of suspected cases of mpox on social media. This is for several reasons, including protecting patient privacy, avoiding stigmatization of people, and mitigating the spread of mis/disinformation where mpox cases from other outbreaks or other countries are labeled as from Kenya, causing panic and fear.

However, the illustration accompanying this article is a WHO public service announcement that portrays two white men touching each other. This is not an accurate reflection of the situation in Kenya and how and where primarily mpox is spread there.

Additionally, this image doesn’t actually help the reader understand how to protect themselves from mpox – it just makes a statement, leaving the recipient with more questions and feelings than before seeing it.

Uncritically using AI-generated images

Generally, I predict more images like in the article below are going to be featured more often. Beyond the fact that the headline is talking about mpox vaccines and the picture is implying to show mpox sample kits – this picture is just not accurate.

We can expect to see more fake or AI-generated images by editors who are trying to come up with a quick photo illustration related to mpox for their new article.

Things to look out for are obviously photoshopped mpox sample kits or vaccine vials or scary needles that are the wrong type or diameter for vaccinations, and images that are being used to illustrate articles about mpox and mpox vaccines. You also might see pictures of scared patients and menacing nurses holding large needles and accompanying articles on vaccine hesitancy.

We saw a lot of this during COVID and these inaccurate pictures can further confuse people.

The bottom line

Lazy editorial choices are being made in news articles about mpox and images accompanying them. Similarly, on social media, some people might also grab the first image they find to underscore their point, which may be inaccurate or stigmatizing or noninformative.

It’s important to find the balance between portraying a situation accurately and in context and dehumanizing people suffering from a disease who didn’t plan on having their faces or their child’s faces and body parts splashed across newspapers and the internet.

The repeated use of specific images can reinforce narratives that are unhelpful, such as “mpox only infects white men,” “mpox only affects Africans,” or “mpox is a sexually transmitted disease” or “you can only get mpox from eating dead monkeys”.

All of these contain partial truths, but stripped of context, they can stigmatize and leave out important information, such as the fact that mpox can be spread through non-sexual contact.

Articles and social media content circulating in Europe about mpox will potentially describe risks and affected population groups differently than, for example, what might be described in a news article in DRC. However, even if this content is accurate, social media knows no borders and images and headlines out of context can quickly spread to other places where the risk of mpox infection and whom it affects looks different.

This is a clear example of how a one-stop shop image and content repositories for communicating about outbreaks can be misused by unwitting communicators or media people.

Whoever is communicating about this mpox global emergency should take extra care in their own work and advise others how to illustrate or portray the outbreak, who is at risk, and what someone suffering from mpox looks and feels like.

I learned a lot about this visual narrative propagation during COVID, and one tool that I keep referring health communicators to is the CDC’s health equity style guide. It has a section on use of inclusive images that you might also find useful.

The post Narrative discordance between headlines and images – and why it matters in this mpox outbreak first appeared on Tina Purnat.

The post Circulating health narratives impact the health system, not just communities first appeared on Tina Purnat.