I’ve always been fond of editorial illustration, specifically because I enjoy taking intangible ideas and giving them physical representation. Since I pursued a career in higher education, I haven’t had any recent opportunities to work in editorial illustration and came to miss it. I am immensely grateful for this chance to create the cover for NPHR and had a lot of fun drawing for a publication again.
To start the process, I had a video call with Meilynn, the editor-in-chief of NPHR. Initially, we considered the digital landscape of misinformation and incorporated elements of a phone, social media, and newspaper in the sketch. However, the telephone game concept was what we ultimately settled on for the cover. We both felt that it effectively portrayed the theme of this journal, as information getting passed along a chain of people, mutating slightly with each person, is oftentimes the root of misinformation. The written pieces also gave me a better idea of who were common parts of the misinformation chain, so I included some specific characters like scientists, pregnant women, and possible influencers. But anyone can be a participant in the misinformation telephone game.
Claire Sun (she/they) received her Bachelor’s of Science in Biochemistry and Marine Biology from UCLA. During her time at UCLA, she worked as an illustrator and designer for the Daily Bruin, UCLA’s student-run newspaper, and illustrated publications for UCLA’s Residential Life Office. Today, Claire works as an academic advisor at UC San Diego and occasionally as a freelance artist. She has made music album covers and music video animations, in addition to her usual editorial illustration and landscape painting work. In her spare time, Claire can be found volunteering at the aquarium, baking, or playing video games.
Instagram, Twitter: @chyrsun chyrsun.com
Dear Readers,
Since the expansion of news outlets from Walter Cronkite to mass media, we’ve found ourselves spiraling down a modern epistemic crisis. Thanks to the Internet and social media, we now have an abundance of information and resources at our fingertips. But this comes with an abundance of false information, and sometimes the line between what is true and what only appears to be true can be quite messy. Some falsehoods are unintentional and based on quick assumptions or misinterpretations, while some are entirely intentional and seek to dissuade and deceive. Regardless of intention, both have consequences —ones that can manifest quickly in science, medicine, and public health.
This journal issue explores some of the many faces of the misinformation epidemic. We start with an article examining how medical knowledge has been democratized over the years through patient activism, direct-toconsumer advertising, and social media. Our
next four pieces focus on specific areas that have been prone to inaccurate and misleading information: reproductive justice and the workings of crisis pregnancy centers; LGBTQ+ health and the repercussions of under- and mis-representation; gag laws and the effects of the absence of information; and health conspiracies and their roots in sense-making cognitive processes.
Throughout, we also include interdisciplinary conversations on how we got here and where we go from here. We speak with Penny Abernathy about the importance of supporting local news and ensuring equitable access to information; Dr. Karen Sheehan about the nuances of public health messaging and community engagement; and Dr. Nathan Abernathy about the role of cognitive biases and the need to slow down. We also include a brief section on health communication strategies, using the RSV vaccine as an example.
This is by no means an exhaustive review, but it is an attempt to reflect on the past, present, and future state of information and knowledge. More importantly, it is an attempt to challenge our readers to ask how we balance access and accuracy and how we decide (or who should decide) what is true, what is not, and perhaps, what is neither. The world is changing rapidly, and it is often hard to keep apace. But good discussion—critical discussion that does not just exist in academic spheres—will help us face the brave new world ahead.
In Health, Meilynn Shi Editor-in-Chief Northwestern Public Health Review
The Democratization of Medical Knowledge
Everyone’s talking about Ozempic,
the drug that can drop your weight by 15 percent,1 lower your risk of heart attack and stroke by 20 percent,2 startle stock markets, reduce alcohol and tobacco tax revenue, and save airlines thousands in fuel costs (and not just because of blown-off doors).3 Ozempic and other GLP-1 agonists are changing guidelines on medical management for type 2 diabetes,4 are becoming part of management for heart failure with preserved ejection fraction (HFpEF),5 may soon become part of care for Alzheimer’s due to its anti-inflammatory effects6 (effects that will have broad-reaching implications for many diseases), and may even uproot preventive medicine’s focus on lifestyle interventions.
But the rise of Ozempic hasn’t come without consequences. People are showing up to the emergency department with nausea, vomiting, and abdominal pain, symptoms that can trigger extensive workups to rule out must-not-miss diagnoses like appendicitis and cholecystitis.7 People are so eager to get their hands on any form of Ozempic that they are taking second jobs to pay the annual $12,000
to $20,0003 and finding slightly different versions through compounding pharmacies, medical spas, and social media.8 Those who can’t afford it are turning to natural remedies like berberine (“Nature’s Ozempic”) or medications that have been historically abused like laxatives (“Budget Ozempic”).9 Those who need Ozempic to control their blood sugars are struggling to fill their prescriptions.3 All the while, we don’t yet have long-term outcomes data for people using Ozempic for indications outside of diabetes.
It has all become another instance of how directto-consumer advertising (DTCA), patient activism, and social media have transformed our relationship with medicine.
DTCA began in the 1980s as a way to tap into
Meilynn Shi
the patient’s consumer power.10 Previously, prescription drugs were only advertised to physicians, primarily due to 1) a 1951 amendment that required prescriptions for potentially dangerous drugs and 2) the American Medical Association’s (AMA) efforts to discourage patients from using alternative treatments, which were not always as effective and would, more importantly, obviate the need to see a physician. Soon, physicians were inundated by advertisements that went essentially unregulated because physicians were considered capable of evaluating an advertisement’s merits on their own.
It wasn’t until the 1960s, when thalidomide, a medication initially promoted for morning sickness, was found to cause serious birth effects, that the Food and Drug Administration (FDA) overhauled regulations and increased oversight over drug approval, labeling, and marketing.10 Then in the 1980s, amid the fervor of the civil rights and patient rights movements, pharmaceutical companies began toying with the idea of directly engaging the consumer. And in 1983, the first prescription drug advertisement was aired on broadcast television.
Initially, many were opposed to DTCA. The FDA did not want patients inappropriately pressuring physicians, physicians did not want it to undermine their authority, consumers tended to trust physicians more than themselves when it came to evaluating the risks and benefits of a drug, and even pharmaceutical companies were wary of upsetting the traditional physician-patient relationship and causing public confusion about a drug.10 Moreover, advertisements often made misleading claims about efficacy and side effects, and air times were not long enough to talk about every important detail.
At the same time, distrust in physicians was growing. Medicine was a fundamentally paternalist institution, with selective access,
power asymmetries, and a long history of abuses. The Civil Rights Movement soon brought new momentum to feminist health activists, cancer activists, patient rights activists, and “groups that construct identities around particular disease categories and assert political claims on the basis of those new identities.”11
During the 1980s, HIV activists, frustrated with political and medical inaction, took matters into their own hands. They established buyers clubs to distribute experimental treatments that had not yet been FDA-approved. They focused on learning the medical language and establishing their credibility, soon gaining positions on federal committees, institutional review boards, and pharmaceutical advisory boards, where they could have a direct say in how clinical trials were conducted and how therapies were approved. Many sociologists credit HIV activists for opening up the space for non-medically trained individuals to have expert voices in medical matters.11
In conjunction with all the changes of the late 1900s—a rise in healthcare costs, a shift toward patient-centered care, the expansion of the Internet— DTCA soon became just a part of life.
Even when the FDA tried to reign back drug advertising in the 1990s, it was met with political backlash from people who wanted innovation to happen faster and wanted medical information to be more accessible.10 The FDA was forced to overhaul its regulations yet again. Instead of including extensive summaries of side effects, contraindications, and effectiveness, as was required in the past, advertisements could now refer consumers to a phone number, print advertisement, website, pharmacist, or physician to obtain
any necessary information.
Today, as many as 80 drug commercials air each hour.12 We see drug advertisements so often it’s easy to forget that the U.S. and New Zealand are the only countries that allow DTCA.10
Many studies have since been conducted on DTCA. Some have found that exposure to advertisements can increase its perceived efficacy,13 increase willingness to pay higher costs,14 and lead to over-prescription.15 Some have found that it can increase care continuity with providers,16,17 reduce stigma, and prevent under-prescription.15 But exposure to advertising can be challenging to measure, especially in an era of social media.
In some ways, it is ironic that as directed advertising toward consumers has increased, directed advertising toward physicians has decreased.
Physicians, more aware of the insidious effects of marketing, especially following coverage of the role of the Sackler family and
Purdue Pharma in the opioid epidemic,18 now intentionally avoid attending pharmaceuticalsponsored lunches and dinners. For any lectures, presentations, and publications, physicians are required to disclose all conflicts of interest, especially if they receive relevant funding from pharmaceutical or biotech companies. Young, attractive women are also no longer intentionally recruited as drug reps (“pharma babes”) and device reps.19
The future of medicine will involve even more patient engagement. We’re already seeing an augmented version of patient-centered care in precision medicine, in which molecular and genetic signatures can be harnessed to individualize therapies. We’re seeing the growth of direct-to-consumer (DTC) genetic testing, which may potentially pave the way for more DTC diagnostics. We’re seeing the growth of social media as a source of information and a platform for engagement.20 And we saw how quickly Ozempic became a drug of the people.
DTC models are likely here to stay.21 Patient rights and consumer power are too entrenched in our social history and values. But we have to address the potential harms. When 23andMe first entered the market, for instance, the
1. Wilding JPH, Batterham RL, Calanna S, et al. Once-Weekly Semaglutide in Adults with Overweight or Obesity. N Engl J Med 2021;384(11):989-1002.
2. Lincoff AM, Brown-Frandsen K, Colhoun HM, et al. Semaglutide and Cardiovascular Outcomes in Obesity without Diabetes. N Engl J Med 2023;389(24):2221-2232.
3. Khullar D. The Year of Ozempic. New Yorker. Published December 14, 2023. Accessed January 24, 2024. https://www.newyorker.com/ culture/2023-in-review/the-year-of-ozempic
4. American Diabetes Association Professional Practice Committee. 9. Pharmacologic Approaches to Glycemic Treatment: Standards of Care in Diabetes-2024. Diabetes Care. 2024;47(Suppl 1):S158-S178.
5. Kosiborod MN, Abildstrøm SZ, Borlaug BA, et al. Semaglutide in Patients with Heart Failure with Preserved Ejection Fraction and Obesity. N Engl J Med. 2023;389(12):1069-1084.
6. Lenharo M. Obesity drugs have another superpower: taming inflammation. Nature. 2024;626(7998):246.
7. Long B, Pelletier J, Koyfman A, Bridwell RE. GLP-1 agonists: A review for emergency clinicians. Am J Emerg Med. 2024;78:89-94.
8. Blum D. Ozempic Is Hard to Find. Some Pharmacies Are Offering Unauthorized Alternatives. New York Times. Published May 16, 2023. Accessed January 24, 2024. https://www.nytimes.com/2023/05/16/ well/live/ozempic-alternatives-semaglutide.html
9. Lee BY. ‘Budget Ozempic’ TikTok Trend: How It’s Contributing To The Laxative Shortage. Forbes. Published September 9, 2023. Accessed January 24, 2024. https://www.forbes.com/sites/ brucelee/2023/09/09/budget-ozempic-tiktok-trend-how-itscontributing-to-the-laxative-shortage/?sh=16a94afa1569.
10. Donohue J. A history of drug advertising: the evolving roles of consumers and consumer protection. Milbank Q. 2006;84(4):659-699.
11. Epstein S. The Construction of Lay Expertise: AIDS Activism and the Forging of Credibility in the Reform of Clinical Trials. Sci Technol Human Values. 1995;20(4): 408-437.
12. Alpert A, Lakdawalla D, Sood N. Prescription Drug Advertising and Drug Utilization: The Role of Medicare Part D. J Public Econ 2023;221:104860.
13. Kamenica E, Naclerio R, Malani A. Advertisements impact the physiological efficacy of a branded drug. Proc Natl Acad Sci U S A 2013;110(32):12931-12935.
science was still evolving. But that didn’t stop people from purchasing tests and showing up to their doctor unnecessarily anxious about single nucleotide polymorphisms (SNPs) that were reportedly linked to increased risk of Alzheimer’s or cancer. The problem was that much of the data on SNPs was based on statistical correlations, not necessarily on wellstudied biological mechanisms.22,23
When there is no clear answer and no one person or group to turn to for credible information, we are particularly susceptible to misinformation.
Ozempic is not a new drug, but we do not yet understand all of the science, such as its long-term effects on metabolism and appetite regulation. Moreover, because popular demand has been high, people have been vulnerable to unregulated and misleading marking campaigns, such as efforts by compounding pharmaceuticals and medical spas to sell similar drugs.24,25 Regulations will need to adapt once again, but it will take time to catch up with social change, and regulations are often not enough.
Some HIV activists in the 1980s felt similarly torn about “whether mechanisms of participatory democracy are automatically of value in the struggle to develop effective therapies or whether scientific ‘progress,’ however understood, might indeed be facilitated by an ‘antidemocratic’ reliance on relationships of trust and authority and by the delegation of science to ‘the experts.’”11 Democratization of information keep us out of the dark. But it increases opportunities for deviations from the truth as more people have the opportunity to portray themselves as credible actors and fewer people know who to turn to for credible information.
We cannot hold the individual patient entirely responsible for interpreting medical information. That is largely a responsibility of physicians, scientists, pharmaceutical companies, and government agencies. But as patients play a bigger role in their own medical decision-making, they will inevitably share some of the responsibility in determining what and who are credible. It’s a messy balance to find. But maybe instead of talking more about Ozempic or the latest triumph, we can talk more about the gray areas, the history, the conundrums. That won’t be enough, but it’s a start. ●
14. Eisenberg MD, Singh Y, Sood N. Association of Direct-to-Consumer Advertising of Prescription Drugs With Consumer Health-Related Intentions and Beliefs Among Individuals at Risk of Cardiovascular Disease. JAMA Health Forum. 2022;3(8):e222570.
15. Kravitz RL, Epstein RM, Feldman MD, et al. Influence of patients’ requests for direct-to-consumer advertised antidepressants: a randomized controlled trial [published correction appears in JAMA. 2005 Nov 16;294(19):2436]. JAMA. 2005;293(16):1995-2002.
16. Eisenberg MD, Rabideau B, Alpert AE, Avery RJ, Niederdeppe J, Sood N. The Impact of Direct-to-Consumer Advertising on Outpatient Care Utilization. Natl Bur Econ Res. 2022.
17. Holmer AF. Direct-to-consumer prescription drug advertising builds bridges between patients and physicians. JAMA 1999;281(4):380-382.
18. Keefe PR. The Family that Built an Empire of Pain. New Yorker Published October 23, 2017. Accessed March 8, 2024. https://www. newyorker.com/magazine/2017/10/30/the-family-that-built-anempire-of-pain
19. Haig S. Attack of the Pharma Babes. TIME. Published January 2, 2007. Accessed January 24, 2024. https://content.time.com/time/
health/article/0,8599,1573327,00.html
20. Bour C, Ahne A, Schmitz S, Perchoux C, Dessenne C, Fagherazzi G. The Use of Social Media for Health Research Purposes: Scoping Review. J Med Internet Res. 2021;23(5):e25736.
21. Phillips KA, Trosman JR, Douglas MP. Emergence of Hybrid Models of Genetic Testing Beyond Direct-to-Consumer or Traditional Labs. JAMA. 2019;321(24):2403-2404.
22. Zettler PJ, Sherkow JS, Greely HT. 23andMe, the Food and Drug Administration, and the future of genetic testing. JAMA Intern Med 2014;174(4):493-4.
23. Sherkow JS, Park JK, Lu CY. Regulating Direct-to-Consumer Polygenic Risk Scores. JAMA. 2023;330(8):691-692.
24. Watson CJ, Whitledge JD, Siani AM, Burns MM. Pharmaceutical Compounding: a History, Regulatory Overview, and Systematic Review of Compounding Errors. J Med Toxicol. 2021;17(2):197-217.
25. Whitley HP, Trujillo JM, Neumiller JJ. Special Report: Potential Strategies for Addressing GLP-1 and Dual GLP-1/GIP Receptor Agonist Shortages. Clin Diabetes. 2023;41(3):467-473.
PENNY ABERNATHY, MBA, MS is a visiting professor at the Northwestern University Medill School of Journalism, Media, Integrated Marketing Communications. She is a journalist and former business executive at the New York Times and Wall Street Journal. Her research focuses on understanding the formation of news deserts and developing business models to sustain community journalism. What follows are excerpts of an interview, in which Abernathy speaks about the importance of local news and on-the-ground reporters in providing access to quality information.
A Conversation on Local News
An Interview with Penny Abernathy
Meilynn Shi
MEILYNN SHI (MS): In one of your articles earlier this year, you wrote, “Through it all, I’ve come to appreciate that the largest news organizations in the country are only as vibrant and reliable as the smallest—and that the health of our democracy depends ultimately on the health of the thousands of weekly and daily newspapers, digital outlets, ethnic media publications and public radio stations that inform the nation’s 330 million residents about what is happening in their own backyards.” However, local news continues to be on the decline. What happened during the past couple decades that got us to where we are today?
PENNY ABERNATHY (PA): There are three things that got us to where we are today. The first is the collapse of the for-profit business model that had sustained tens of thousands of newspapers. Most people are surprised to learn that newspapers were often the prime, if not the sole, source of news and information in communities, and they relied on advertisers for 85
percent of the profits. Most of us made the assumption that if newspapers could just transition to a digital format, they would be okay.
But the second problem is that the large tech companies, like Facebook and Google, have siphoned off 75 to 80 percent of all the digital dollars in a typical market. That means that you have all of the legacy media, as well as startup digital media, fighting with the tech giants, and the tech giants rely on scale.
[The third problem is] the social media phenomenon, in which everybody decided [there was no] need to have a newspaper when you could get it in your daily newsfeed, which is built by an algorithm. Depending on what you Googled in the past day or what Alexa heard you say at some point, you might get a newsfeed that has no credibility, comprehensiveness, or context.
MS: You mention in your books the need to reimagine
the business model for local news. You have also written about how good journalism alone is not sufficient to save local news organizations. I tend to think that traditionally, journalism and business have run counter to each other, and that when business interests get involved, you might end up with selective coverage of certain stories and voices. But why is it important or necessary that this new type of business model is developed for local news?
PA: It’s not going to be one business model. One of the things people don’t understand is that advertisers were not buying the news. They were buying to reach an audience. One of the ways to attract advertisers was a) to be nonpartisan and b) to try to cover a whole range of people in a community. As penetration has dropped, that has left the for-profit model, especially in poor neighborhoods and communities, without a model.
If we look to nonprofit, we have lost on average about $60 billion in revenue each year.
You can’t begin to replace what we’ve lost in terms of journalists throughout the news ecosystem to cover all the things that we’ve covered before.
We need to look at for-profit models, we need to look at nonprofit models, and we need to look at public policy.
U.S. taxpayers pay only a fraction of what taxpayers pay for public media in Japan, Australia, and just about any European country, where there is more support for public media. If those other countries lose legacy or for-profit newspapers, they still have a robust public broadcasting system that goes down to the regional level. Ours is only at the national level. NPR, which goes down to the regional level, gets only a pittance of my tax dollars. Most of it goes to PBS to pay for programs that are meritorious, like Masterpiece Theatre, but it’s entertainment. It’s not news and information.
MS: What is it going to take to get the funding to be able to revive local news?
PA: We need to understand where the for-profit model is still working—I would say in about one-third of the
market, it’s still working—and what will keep it working there. Second, we need to figure out a way to get the nonprofit dollars into some of these markets on the outskirts of the metro areas. Ninety percent of the nonprofit organizations that are supporting news are located in metro areas, and 90 percent of the dollars are going there.
Third, we need public policy that addresses several things. One, we need public policy at the national, state, and local level that gives some kind of support from us as taxpayers. Second, even though the telecoms say 90 percent of the country has access to high-speed Internet, the numbers are actually much lower once you get out of the main metro area. What you get on your phone and what you have access to in terms of critical and credible news and information depends on what you can access. In rural areas, the only things you can often access is through your cell phone, and what’s the easiest thing to access on your cell phone? A social media app or your news feed.
MS: If we make sure that everyone has access to local news, and we increase the amount of local news outlets back to the numbers in the early 2000s, will that be enough to address misinformation?
PA: It’s a very complicated issue. A lot of programs and organizations are saying we need to have civics education and news literacy down at the junior high level, so that people understand how their vote in a local election can affect everything all the way up to Washington and how they are missing things from social media. There are a lot of good programs that educate people on spotting fake news, and it’s alarming how many people cannot spot fake news that runs on social media. We need to understand that social media can be a good instrument for informing the public, but it also can be misused mightily for those who would like to traffic misinformation.
Let me give you an example during the recent pandemic. [Newspapers like the New York Times, Washington Post, and state newspapers] relied on the state health department and Johns Hopkins [for information], and there was often a lag of three to four weeks. In an adjacent county [to where I live], there was a very good newspaper who quickly realized the best way to get the information about what was happening there was to go
to the head of the hospital and say, how many people have you admitted with COVID-19? What ages are they? How many have died of COVID-19?
When we don’t have journalists on the ground, we’re reliant on a system of collecting data that either comes from the government or comes from people’s anecdotal evidence.
The loss of local newspapers—because they were often the only thing covering small communities—means that they [national security and public health officials] have trouble tracking epidemics. [In the past,] they relied on the local newspaper to talk about an uptick in measles. Forget a pandemic, just the normal cycle of a flu season is very hard to track now. That’s why we need robust, credible news organizations on the ground and someone who’s trying to put that all in perspective
The Federal Communications Commission (FCC) estimated [in 2011] that as much as 85 percent of the news that reached the New York Times or NBC originated on the ground with a weekly or small paper. Because many of those reporters were also stringers for larger papers or would file stories with the Associated Press, you had an early warning system that you don’t have now.
MS: What is going to be the role of ethnic media?
PA: The role of ethnic media is very critical here, in part because mainstream media has not necessarily covered the issues that affect ethnic media in the same way that it affects the majority population in the U.S. What concerns me most is that ethnic media has suffered, in
many ways, the exact same problems as newspapers and television stations have, and they’re in much worse shape because they started with much smaller profit margins. Ethnic media will also need to understand that the way people consume information is different.
MS: In one of your books, you mentioned a need to “prepare to exploit the potential inherent in the next generation of digital technology,” such as AI. What will the role of these technologies be in local news?
PA: AI could be like social media. It can help gather information, help us analyze it, help us organize it, but you have to understand what you’re doing. You could make an AI algorithm that says I’m going to see how much of the news that is on Facebook actually fits the FCC critical information needs [based on the 2011 FCC report, “The Information Needs of Communities.”] If you just base the algorithm on the headlines—because it’s much more complicated to write an algorithm that goes down and checks the veracity of a story—about 60 percent of what was going on Facebook satisfied the FCC critical information needs.
When we looked specifically in North Carolina, we noticed that 57 of the 60 stories were crime stories. Second, we noticed that because it was based on an algorithm, things that were of public safety often didn’t make it until days after it was relevant. For instance, when a hurricane was bearing down on North Carolina, it didn’t make Facebook until four days after the hurricane was already out to sea. Third, there was a lot of good contextual reporting being done by television stations, newspapers, and digital sites, but because they didn’t have an audience, and because social media depends on scale and sharing, they never made it on social media.
It’s a loss for us individually as citizens not to have local news. ●
Crisis Pregnancy and
Elissa Schaffner
Elissa Schaffner is a second-year graduate student in the Biomedical Visualization program at the University of Illinois at Chicago, specializing in medical-legal illustration, patient education, and 3D modeling. Her hometown is Twinsburg, Ohio, where she attended Cleveland State University receiving her bachelor’s in the biological sciences. Currently, she is working on a research project with Wild Hearts Pet Care in the Logan Square neighborhood of Chicago, creating 3D interactives for canines with spinal cord injuries, specifically covering manual bladder expression. She has a deep appreciation for the natural world and loves to be immersed in an evergreen forest.
WHILE VOLUNTEERING AS AN ABORTION CLINIC ESCORT, LISA BATTISFORE REPEATEDLY HEARD ANTIABORTION PROTESTERS
SHOUTING, “8 SOUTH MICHIGAN! GO TO 8 SOUTH MICHIGAN!”
As a clinic escort, her job was to assist patients in entering and exiting abortion facilities safely, so these protesters caught her attention. After some investigation, Battisfore learned that the protesters were advertising a crisis pregnancy center (CPC) located at that address. In 2021, inspired by these experiences and in partnership with other clinic escorts, Battisfore founded Reproductive Transparency Now (RTN), a nonprofit organization dedicated to raising awareness about CPCs. RTN now organizes protests at CPCs around Chicago. To our knowledge, RTN is the only organization dedicated solely to exposing CPCs.
Artist
Pregnancy Centers and the Threat to Public health
An Interview with Lisa Battisfore
Caroline Clingan
“The idea was to take the battle to their turf, take the protests to the [CPCs’] turf,” Battisfore says.
WHAT ARE CRISIS PREGNANCY CENTERS?
CPCs—also known as pregnancy resource centers, pregnancy care centers, or antiabortion centers—are organizations that present themselves as healthcare clinics but whose primary aim is to dissuade patients from pursuing abortions. CPCs attract patients by offering free pregnancy tests, ultrasounds, and testing for sexually transmitted infections (STIs), and by advertising themselves as destinations for all-options counseling and pregnancy care. However, in actuality, the
counseling they provide is biased against abortion and is usually inaccurate or misleading.
As of 2020, there are more than 2,500 CPCs in the U.S., outnumbering abortion facilities 3 to 1.1
Despite the large and long-lived presence of CPCs, many do not know about their existence.
CPCs are mission-based organizations, most of which are funded by large anti-abortion nonprofits and are affiliated with Catholic and evangelical Christian groups. While some
LISA BATTISFORE, MBA (SHE/HER) is the founder and president of Reproductive Transparency Now (RTN), a Chicago-based nonprofit organization dedicated to advancing reproductive justice by raising awareness about anti-abortion crisis pregnancy centers (CPCs) through direct action, education, and advocacy. Before founding RTN, Lisa volunteered as an abortion clinic escort with Illinois Choice Action Team and as a Big Sister with Big Brothers Big Sisters of Metropolitan Chicago.
Outside of her advocacy work, Lisa is a corporate strategy professional in the healthcare industry and has 15 years of experience in marketing and brand management. She graduated with a Bachelor’s degree in Biological Sciences from Northwestern University and a Master’s in Business Administration from the Kellogg School of Management.
CPCs do provide limited medical services like ultrasounds, most CPCs are not licensed medical facilities, and most of their staff are not licensed clinicians.2 A large study of CPCs in nine states found that only 16 percent of CPCs had a physician and only 25 percent had a registered nurse on staff. Furthermore, only 5.1 percent of CPCs offered prenatal care.3 Still, CPC staff and volunteers often wear white coats and see clients in exam rooms, which makes them appear like legitimate healthcare centers.2 This article highlights how CPCs deceive their clients, threatening patient autonomy, equity, and safety. Regardless of readers’ personal views on abortion, this article aims to raise awareness of CPCs and their negative impacts on reproductive justice.
CPCS SPREAD DISINFORMATION
While CPCs are currently legal under the guise of free speech, they spread disinformation about the risks associated with abortion and, as a result, threaten reproductive justice. Two common myths propagated by CPCs are that of Abortion Pill Reversal and Post Abortion Syndrome.
Abortion Pill Reversal refers to the idea that progesterone can be taken after mifepristone, one of the pills used in medical abortions, to reverse an abortion. This practice has been denounced by the American College of Obstetricians and Gynecologists (ACOG) as it is not supported by the scientific literature and may be associated with safety risks like bleeding.4-6
Secondly, Post Abortion Syndrome refers to the alleged negative psychological effects that follow an abortion.7 The notion that women who undergo abortions have worse psychological outcomes than those who continue their pregnancies has been disproven by academic researchers8 and refuted by professional medical associations including the American Psychological Association, American Psychiatric Association, American Medical Association, ACOG, and the American Public Health Association.7 The landmark study that disproved Post Abortion Syndrome, called the Turnaway Study, actually showed that women who were denied abortions experienced poorer psychological outcomes than women who were provided a desired abortion.9
Other examples of false information spread by CPCs include linking abortion to an increased risk of breast cancer, preterm birth, and future infertility, all of which have been
proven false associations.10,11 Battisfore says that CPCs sometimes provide references for these claims, but when they do, they cite outof-date information, poorly or unethically designed studies, or articles that are not even relevant to the topic at hand. By spreading medical disinformation, CPCs deny patients the opportunity to make fully informed decisions about their pregnancies. In doing so, they obstruct patient autonomy, one of medicine’s core ethical principles.
CPCS CREATE BARRIERS TO QUALITY HEALTHCARE
In addition to spreading disinformation, CPCs thwart access to quality prenatal care and abortion care. For example, STI testing is recommended during pregnancy to prevent transmission of STIs to the fetus. However, only 20.9 percent of CPCs offer STI testing, and among those that do, it is not comprehensive: 64 percent do not offer HIV testing, and 32 percent do not offer STI treatment.12,13 This is incomplete medical care that does not meet national evidence-based standards for STI screening and treatment during pregnancy.14 In this way, CPCs distract and delay patients from obtaining comprehensive, evidencebased prenatal care.
“People need healthcare, and they end up at this place, but they are getting incomplete, inaccurate pseudoscience,” Battisfore says. “For some, this was their one shot. They’re probably not going to get more [healthcare], and they don’t even realize that what they did get was trash.”
CPCs also prevent patients from attaining abortion care by taking advantage of the precious commodity of time during pregnancy. As of August 2023, 2 states ban
abortion at six weeks, 2 states ban abortion at 12 weeks, and 2 states ban abortion at 15 weeks.15 These are just a handful of the gestational-age bans in place, which highlight how delaying abortion care by just one or two weeks could leave a patient unable to access abortion care in their state. Furthermore, medication abortion can only be obtained until 10 weeks gestational age, after which surgical abortion is the only option.16 CPCs know that any time spent at a CPC may limit a patient’s options for and access to abortion care, and they take advantage of this.
CPCS THREATEN HEALTH EQUITY
CPCs threaten health equity by targeting vulnerable communities. This often includes people of color, young people, college students, and people of lower socioeconomic status.17
“The fact that they are using free pregnancy tests, free ultrasounds, as their main calling card—who is going to be seeking that? The people who are already at a disadvantage, who will have difficulty obtaining those things [otherwise],” Battisfore says.
According to Battisfore, CPC advertisements and pamphlets frequently feature women of color because that is their target audience. A study of CPCs in Ohio demonstrated that CPC clients were more likely to be women
of Black, non-Hispanic race/ethnicity and of low socioeconomic status.18 Several years ago, a network of CPCs launched an “urban initiative” explicitly focused on Black women and on opening CPCs in communities of color.3,17 These data demonstrate how CPCs exploit disadvantaged groups, a concerning phenomenon given our nation’s long history of health inequities.
In the U.S., maternal mortality, which refers to death during pregnancy or in the year following pregnancy, has become an urgent public health priority in the last several decades. Maternal mortality is higher in the U.S. than in most other developed countries and has been increasing in the U.S. since the 1990s while decreasing globally.19,20 Racial disparities in maternal mortality are especially striking in the U.S., with a 3-fold higher maternal mortality rate among Black women compared to White women.21
In this context, CPCs are interacting with pregnant individuals at a highly vulnerable time. By targeting people of color, all of the potential harms of CPCs—including disrespect for patient autonomy, decreased trust in the healthcare system, delay of prenatal care, and delay of abortion care— may disproportionately burden people of color and worsen disparities in maternal mortality and other health metrics. Regulation of the CPC industry and further research on associated health impacts is needed to ensure that CPCs do not worsen health equity or maternal mortality.
THE POLICY LANDSCAPE AROUND CPCS
A discussion of CPCs would not be complete without a discussion of the surrounding policy landscape. Following a handful of other states,
Illinois introduced a bill in February 2023 that aimed to criminalize CPCs on the basis of deceptive advertising. The bill was passed but then immediately blocked, and in December 2023, it was permanently blocked. While Battisfore hopes that states continue to enact policies that regulate CPCs, she asserts that policies are insufficient.
Policies only penalize CPCs after the fact, after harm has occurred.
She describes her goal as an activist as preventing harm from occurring in the first place.
“It really continues to be, and will always be, incumbent upon community activists and community leaders to make sure people know the truth about CPCs,” Battisfore says. “Having the law in place is ideal, obviously, because then when there are complaints, our government officials can take action. But having justice and bodily autonomy dependent upon elected officials is inherently problematic. There’s always going to be more ways for them to skirt the different issues.”
The argument in support of CPCs usually surrounds the material support they provide for pregnant people. In addition to free pregnancy tests and ultrasounds, most CPCs offer resources like free diapers, maternity clothes, and parenting classes.2 In fact, recent research has shown that the majority of people who visit a CPC are not considering abortion. Instead, the most common motivations for visiting a CPC are to receive free pregnancy testing and infant supplies.22,23 In this way, CPCs have the potential to benefit pregnant
individuals, particularly those who want to continue their pregnancies.
With that being said, CPCs’ charitable programming is not completely benign. Battisfore comments that, in most cases, clients must earn access to CPC resources. Programs such as “Earn While You Learn” use currency called “baby bucks” or “mommy money” that are earned by attending sessions ranging from parenting classes to Bible study or abstinence-only sex education.24
Access to CPC resources is thus not without strings attached and is deeply intertwined with their Christian mission. A more equitable approach would be to provide material resources alongside these classes, not in exchange for attendance. This would help ensure that vulnerable clients are not being coerced into participation because of their economic circumstances.
Of note, ten states utilize federal funds under the Temporary Assistance for Needy Families
program to support CPCs, and 29 states allocate state funds to support CPCs. However, despite substantial use of public funds by CPCs, policymakers have not conducted comprehensive assessments of CPC services or their use of taxpayer dollars.3 There is an urgent need for systematic evaluation of CPCs to assess their maternal and public health consequences, particularly if public funding continues to be invested in these organizations.
A CALL TO ACTION
Drawing on her experience with RTN, Battisfore offers some advice for physicians and patients on how to avoid the harms of CPCs. Regardless of physicians’ personal views on abortion or training in abortion procedures, they are trusted resources for their patients and are ethically obligated to provide referrals when patients are seeking this kind of care. Physicians should educate themselves on CPCs in their region and educate their patients who are undergoing or considering
1. Swartzendruber A, Lambert DN. A Web-Based Geolocated Directory of Crisis Pregnancy Centers (CPCs) in the United States: Description of CPC Map Methods and Design Features and Analysis of Baseline Data. JMIR Public Health Surveill. 2020;6(1):e16726.
2. Bryant AG, Swartz JJ. Why Crisis Pregnancy Centers Are Legal but Unethical. AMA J Ethics. 2018;20(1):269-277.
3. The Alliance: State Advocates for Women’s Rights and Gender Equality. Designed to Deceive: A Study of the Crisis Pregnancy Center Industry in Nine States. Published October 28, 2021. Accessed December 22, 2023. https://alliancestateadvocates.org/wp-content/ uploads/sites/107/Alliance-CPC-Study-Designed-to-Deceive.pdf
4. Facts Are Important: Medication Abortion “Reversal” Is Not Supported by Science. American College of Obstetricians and Gynecologists. Accessed December 22, 2023. https://www.acog.org/ advocacy/facts-are-important/medication-abortion-reversal-is-notsupported-by-science
5. Battisfore L. Crisis pregnancy centers’ favorite lie: abortion pill reversal. Reproductive Transparency Now. July 30, 2023. Accessed December 22, 2023. https://www.reprotransparency.org/post/theabortion-pill-reversal-lie-part1
6. American College of Obstetricians and Gynecologists. Issue Brief: Crisis Pregnancy Centers. Published 2022. Accessed December 22, 2023. https://www.acog.org/advocacy/abortion-is-essential/ trending-issues/issue-brief-crisis-pregnancy-centers
7. Kelly K. The spread of ‘Post Abortion Syndrome’ as social diagnosis. Soc Sci Med. 2014;102:18-25.
8. Biggs MA, Brown K, Foster DG. Perceived abortion stigma and psychological well-being over five years after receiving or being denied an abortion. PLoS One. 2020;15(1):e0226417.
9. The Turnaway Study. Advancing New Standards for Reproductive Health. Accessed December 22, 2023. https://www.ansirh.org/ research/ongoing/turnaway-study
10. Bryant AG, Levi EE. Abortion misinformation from crisis pregnancy centers in North Carolina. Contraception. 2012;86(6):752-756.
11. Bryant AG, Narasimhan S, Bryant-Comstock K, Levi EE. Crisis pregnancy center websites: Information, misinformation and disinformation. Contraception. 2014;90(6):601-605.
12. Crisis Pregnancy Center Map. Accessed December 22, 2023. https://crisispregnancycentermap.com
pregnancy on the existence of CPCs. When providing referrals to abortion care or family planning centers, physicians should be certain of the centers’ credibility and licensure.
For patients seeking reproductive healthcare, Battisfore recommends starting with the Planned Parenthood website. For patients seeking an abortion, she recommends using a verified resource to find an abortion clinic, like ineedana.com or abortionfinder.org. If a patient uses their search engine to find an abortion clinic, Battisfore advises that they do not click the sponsored results or advertisements that show up at the top of the results list, as most of these will be CPCs.
Just this year, a CPC opened next to the Planned Parenthood clinic in the Old Town neighborhood of Chicago.
This is the closest Planned Parenthood clinic to Northwestern’s medical campus.
CPCs pose a serious and growing threat to public health. It is likely that CPCs will increase in prevalence as abortion restrictions increase in post-Roe America.
We encourage readers to investigate CPCs further on their own, as the literature on CPCs is vast. For readers who live in Chicago, RTN is accepting volunteer applications and also offers informational sessions to raise awareness about CPCs in small-group settings. We encourage readers to support state laws that regulate CPCs, so that patients can be better protected from medical disinformation and can engage in informed decision-making during their pregnancies. As we progress further into the digital age, healthcare professionals, public health practitioners, social justice activists, and beyond must advocate for accurate healthcare information and for the end of misinformation and disinformation. ●
13. Rice R, Chakraborty P, Keder L, Turner AN, Gallo MF. Who attends a crisis pregnancy center in Ohio?. Contraception. 2021;104(4):383-387. 14. Workowski KA, Bachmann LH, Chan PA, et al. Sexually Transmitted Infections Treatment Guidelines, 2021. MMWR Recomm Rep 2021;70(4):11-13.
15. State Bans on Abortion Throughout Pregnancy. Guttmacher Institute. Published August 29, 2023. Accessed February 4, 2024. https://www.guttmacher.org/state-policy/explore/state-policieslater-abortions
16. American College of Obstetricians and Gynecologists. Medication Abortion Up to 70 Days of Gestation. Published October 2020. Accessed February 4, 2024. https://www.acog.org/clinical/clinicalguidance/practice-bulletin/articles/2020/10/medication-abortionup-to-70-days-of-gestation
17. Montoya MN, Judge-Golden C, Swartz JJ. The Problems with Crisis Pregnancy Centers: Reviewing the Literature and Identifying New Directions for Future Research. Int J Womens Health. 2022;14:757-763.
18. Swartzendruber A, Solsman A, Lambert DN. The Availability of HIV and Sexually Transmitted Infection Testing and Treatment Services at Crisis Pregnancy Centers in the United States. Sex Transm Dis
2021;48(10):738-747.
19. Douthard RA, Martin IK, Chapple-McGruder T, Langer A, Chang S. U.S. Maternal Mortality Within a Global Context: Historical Trends, Current State, and Future Directions. J Womens Health (Larchmt) 2021;30(2):168-177.
20. Tikkanen R, Gunja MZ, FitzGerald M, Zephyrin LC. Maternal Mortality and Maternity Care in the United States Compared to 10 Other Developed Countries. Issue Brief (Commonw Fund). 2020.
21. Chinn JJ, Eisenberg E, Artis Dickerson S, et al. Maternal mortality in the United States: research gaps, opportunities, and priorities. Am J Obstet Gynecol. 2020;223(4):486-492.e6.
22. Kimport K. Pregnant Women’s Reasons for and Experiences of Visiting Antiabortion Pregnancy Resource Centers. Perspect Sex Reprod Health. 2020;52(1):49-56.
23. Kimport K, Dockray JP, Dodson S. What women seek from a pregnancy resource center. Contraception. 2016;94(2):168-172.
24. Kissling A, Gursahaney P, Norris AH, Bessett D, Gallo MF. Free, but at what cost? How US crisis pregnancy centres provide services. Cult
Health Communication Strategies
Brandon Boyle, Lili Bui
Since June 2023, the approval of RSV vaccines has led to significant public health milestones. However, general anti-vaccination sentiments and unclear information surrounding the vaccines has led to hesitancy and confusion regarding who should receive which vaccine and when they should.
The RSV vaccine rollout is yet another reminder of the importance of health communication. Here, we showcase an example of a patient handout on the RSV vaccine, using best practices of health communication. It is not perfect but attempts to highlight the following strategies:
• Make it ACCESSIBLE by simplifying the language, keeping it concise, and breaking up the text with headings and formatting
• Make it MEANINGFUL by tailoring it to your audience and writing about what is important to and what directly affects your audience
• Make it ACTIONABLE by writing about specific things your audience can do
• Make it VISUAL by including images and graphics (not demonstrated here)
The following are additional guides:
• Simply Put: a Guide for Creating Easy-to-Understand Materials (https://stacks.cdc.gov/view/cdc/11938)
• Health Literacy: A Manual for Clinicians (http://lib. ncfh.org/pdfs/6617.pdf)
• Federal Plain Language Guidelines (https://www. plainlanguage.gov/media/FederalPLGuidelines.pdf)
• Centers for Medicare and Medicaid Services: Writing for the Web (https://www.cms.gov/files/document/ writing-web.pdf) ●
WHAT IS RSV?
RSV is a highly contagious virus that causes 70 to 80 percent of lower respiratory infections, most commonly bronchiolitis and pneumonia among children.1 RSV season typically runs from September to January. While RSV infections are most common in young children, the consequences can be equally as severe in older adults, especially those ≥60 years old, those who are immunocompromised, and those with underlying health conditions such as cardiopulmonary disease.2
Vaccines can now help lower the risk of respiratory infection, hospitalization, and other consequences.
WHAT ARE THE TYPES OF RSV VACCINES?
There are currently three primary RSV vaccines:
• Nirsevimab (Beyfortus™)
• RSVpreF (Abrysvo™)
• RSVpreF3 (ArexvyTM)
WHO SHOULD RECEIVE THE RSV VACCINE, WHICH ONE, AND WHEN?
The Advisory Committee on Immunization Practices (ACIP) recommends the RSV vaccine for infants,3 pregnant individuals,4 and adults ≥60 years old.2
Infants
The ACIP recommends the Nirsevimab vaccine within the first week of life for infants <8 months entering their first RSV season and for at-risk infants and children 8 to19 months entering their second RSV season.3 Clinical
Strategies
trials have found that the vaccine decreases respiratory infections by 70 to 75 percent.5-8
Pregnant Individuals
The American College of Obstetricians and Gynecologists (ACOG) recommends that pregnant individuals get a single dose of the RSVpreF vaccine between 32 and 36 weeks, during RSV season.9 This helps protect the infant up to the first 6 months of life.4 RSVpreF is currently recommended due to a shortage of Nirsevimab.10 Clinical trials have found that the vaccine has a 82 percent efficacy of passing on RSV antibodies to the baby and can reduce the risk of infant hospitalization by 57 percent within the first 6 months after birth.10
Adults ≥60 Years Old
The ACIP and Centers for Disease Control and Prevention (CDC) recommends that adults ages 60 and above get either the RSVpreF or RSVpreF3 before the start of the RSV season. Clinical trials have found an 83 to 89 percent reduction in respiratory infections following vaccination.11,12 Some studies have also found that a single dose of the vaccine may provide protection against future RSV seasons, but the research is still ongoing.11
WHAT ARE THE SIDE EFFECTS OF THE RSV VACCINE?
The RSV vaccine has similar side effects to other vaccines. Common side effects include pain, redness, swelling, fatigue, fever, headache, nausea, diarrhea, and muscle or joint pain.11
1. Stewart DL, Romero JR, Buysman E, Fernandes AW, Mahadevia PJ. Total healthcare costs in the US for preterm infants with respiratory syncytial virus lower respiratory infection in the first year of life requiring medical attention. Curr Med Res Opin. 2009;25(11):27952804.
2. Melgar M. Use of Respiratory Syncytial Virus Vaccines in Older Adults: Recommendations of the Advisory Committee on Immunization Practices—United States, 2023. MMWR Morb Mortal Wkly Rep. 2023;72.
3. Jones JM. Use of Nirsevimab for the Prevention of Respiratory Syncytial Virus Disease Among Infants and Young Children: Recommendations of the Advisory Committee on Immunization Practices—United States, 2023. MMWR Morb Mortal Wkly Rep. 2023;72.
4. FDA News Release. FDA Approves First Vaccine for Pregnant Individuals to Prevent RSV in Infants. FDA. Published August 21, 2023. Accessed July 21, 2024. https://www.fda.gov/ news-events/press-announcements/fda-approves-first-vaccine-pregnant-individualsprevent-rsv-infants
5. Office of the Commissioner. FDA Approves New Drug to Prevent RSV in Babies and Toddlers. FDA. Published July 17, 2023. Accessed July 21, 2024. https://www.fda.gov/ news-events/press-announcements/fda-approves-new-drug-prevent-rsv-babies-andtoddlers
6. Griffin MP, Yuan Y, Takas T, et al. Single-Dose Nirsevimab for Prevention of RSV in Preterm Infants. NEJM. 2020;383(5):415-425.
7. Hammitt LL, Dagan R, Yuan Y, et al. Nirsevimab for Prevention of RSV in Healthy LatePreterm and Term Infants. NEJM. 2022;386(9):837-846.
8. Domachowske J, Madhi SA, Simões EAF, et al. Safety of Nirsevimab for RSV in Infants with Heart or Lung Disease or Prematurity. NEJM. 2022;386(9):892-894.
9. American College of Obstetricians and Gynecologists. Maternal Respiratory Syncytial Virus Vaccination. ACOG. Published September 2023. Accessed July 21, 2024. https:// www.acog.org/clinical/clinical-guidance/practice-advisory/articles/2023/09/maternalrespiratory-syncytial-virus-vaccination
10. Kampmann B, Madhi SA, Munjal I, et al. Bivalent Prefusion F Vaccine in Pregnancy to Prevent RSV Illness in Infants. NEJM. 2023;388:1451-1464.
11. Centers for Disease Control and Prevention. Vaccines for Older Adults. CDC. Published August 30, 2024. Accessed July 21, 2024. https://www.cdc.gov/vaccines/vpd/rsv/public/ older-adults.html
12. Walsh EE, Gonzalo Pérez Marc, Zareba AM, et al. Efficacy and Safety of a Bivalent RSV Prefusion F Vaccine in Older Adults. NEJM. 2023;388(16):1465-1477.
KAREN SHEEHAN, MD, MPH is a Professor of Pediatrics, Medical Education, and Preventive Medicine at Northwestern University’s Feinberg School of Medicine. She is also Associate Chair for Advocacy in the Department of Pediatrics and Co-founder of the Chicago Youth Programs (CYP). Her research includes studies on addressing firearm injury, unintentional injury, and health equity among children and adolescents. What follows are excerpts from a conversation, in which Sheehan speaks about the importance of framing public health messages and engaging directly with
A Conversation on Community Trust
An Interview with Dr. Karen Sheehan
Meilynn Shi
MEILYNN SHI (MS): You’re involved in a lot of complex policy advocacy and medical discussions, particularly about injury prevention among children and adolescents. What is the most common and what is the most harmful piece of misinformation you tend to encounter?
DR. KAREN SHEEHAN (KS): For injury prevention, it’s probably around firearm safety: not having all the facts, not thinking of it as a public health issue, [not understanding] that there are strategies we could use to help prevent injuries from occurring. Often people will say, “Well, guns don’t kill people. People kill people.” But guns make it so lethal and make it so easy.
There are strategies that we can use to help keep people safe, such as if you need to have a gun, storing the bullets and the gun separately and [keeping the gun] locked. There are things that we can do to help prevent firearm injuries from occurring, [especially since] a gun in the home increases the risk of suicide
and unintentional injury.
MS: A lot of it is related to framing, messaging, and using the right words. I think this can be hard sometimes because we have different interpretations of things that can be related to individual, cultural, and sociopolitical understandings, which can also change over time. How should we approach finding the right way to frame messages, as well as reframe messages that have been misinterpreted in the past?
KS: It involves engaging the people who are most impacted and having them become the trusted messenger. That can help get through some of those cultural and language barriers.
When COVID-19 first hit, it disproportionately impacted communities that have been historically disinvested in. Our community partners, with whom we’ve had longstanding relationships through the Lurie Children’s
Patrick M. Magoon Institute for Healthy Communities, came to us and asked if there was a way we could help them get vaccines into the community. They felt they could come to us for help. We also arranged native Spanish-speaking physicians to answer any questions that [Spanish-speaking community members] might have about vaccines. It’s about making those connections to see where you can find a shared platform to build trust upon because it really does come down to trust.
One of our biggest challenges right now is all these fake news sites. How can you tell what’s true and not true? That’s really tough. We can let people know what is real or not real, but it can be tricky to know what the truth is.
MS: Building trust with communities is something we talk a lot about in medical school as well. In addition to understanding a community and finding shared messaging, what are some of the ways we connect with communities and build trust with communities?
KS:
Just show up. Go out to the communities. Go spend some time there.
That really makes the difference. It always seems like we’re so busy as healthcare professionals and we don’t have the time to do this. But it is the most rewarding thing you could ever do. That’s the best way to build trust, to spend time with [community members and community organizations], get to know them as people, and better understand what pressures they are facing.
Small nonprofits are always scrambling for funding. Even the big organizations are. Public health is not well funded in this country. [It’s important] to understand what other responsibilities they have. They might be interested in your project, but they’re grant-funded to do other work. If they’re not being funded to do it, it could be a challenge. Sometimes you understand that better when you’re out there with them.
MS: Are there ways to leverage social media to tackle misinformation and reach out to communities?
KS: I do, but I think it could be tricky.
Complicated public health messaging can be hard to distill into a couple little sound bites.
Say, for example, I have a mom who wants to co-sleep with her kids. The American Academy of Pediatrics would say no, you should never do that. In my clinical practice, we do shared decision-making. If this is something that a patient strongly believes in, we can discuss all the risks and why we don’t recommend it, but I can also give them strategies to help keep their kids safe. For example, instead of putting a baby on the bed against the wall so they don’t roll out, it’s actually better to put them on the outside of the bed because if they roll out, they won’t hurt themselves—I know that from being an ER physician for 25 years—but they could get smothered if they got trapped by rolling into the wall. How can you explain that in a five-second public health message? I can’t go into that level of detail.
That’s where the tension is. Those complex messages are hard. Or people manipulate what you say and just take a sound bite. You could say everything perfectly for four hours and then you misspeak for one second, and that’s what makes the news. It’s tough.
[At the same time,] public health messaging is where a lot of people get their information from. As healthcare professionals, we should try to get more pro-public health messaging out there because otherwise the conversation becomes dominated by other people that might not have everyone’s interest at heart.
MS: It’s becoming more and more important to understand who is credible. For example, we traditionally think of public health officials, healthcare providers, and medical associations as authorities on public health and medical topics, but some of those distinctions are starting to blur. How do we navigate that space of determining credibility and authority?
KS: It’s hard to blanketly tell people [what or who to trust]. It’s tough. It’s going to be important for healthcare professionals and public health professionals to hone our communication skills and think about it more than we currently are. It’s such a huge issue right now, and it’s just going to get more polarizing if we don’t pay attention to it. I don’t have any magic solutions unfortunately, only more questions. ●
Combating Misinformation in LGBTQ+ Health
Renée Brown
Content warning: Please be advised the following text contains references to anti-LGBTQ speech, some of which can be emotionally disturbing to read.
My passion project, The E(Queer)ity Podcast, arose from my frustrations with the misinformation surrounding LGBTQ+ health.
On the podcast, I speak with passionate individuals who lead community-focused initiatives that support the health of marginalized queer folx. These individuals are paving the way in establishing equitable healthcare for this population. Together, we discuss LGBTQ+ health inequities and how misinformation perpetuates them.
There are many reasons why we spread and believe misinformation, including emotional, cognitive, and behavioral factors related to human interactions. For example, the “illusory truth” effect suggests that we are more likely to believe information that is repeated.1
When false or misleading information is shared numerous times, we often end up assuming that information as truth rather than rethinking the basis of that
information.
Consequently, the spread of these untruthful ideas can harm communities, particularly minoritized groups like LGBTQ+ people who already experience stigma and discrimination.
This was the case during the Mpox (or formerly called monkeypox) outbreak of 2022. Premature assumptions about uncertain information led to inaccurate public health communication. In the episode, “40+ Years Following the First Report of HIV/AIDS in June 1981: Where Are We Now?”, I discuss with Dr. Steven Thrasher, the inaugural Daniel H. Renberg Chair of Social Justice in Reporting at Northwestern University, how the initial messaging around Mpox did not provide an accurate understanding of preventive practices. Many groups issued statements that the disease was not sexually transmitted.2,3 However, the virus meets epidemiological criteria to justify classification as a sexually transmitted infection (STI).4
Dr. Thrasher and I discussed how healthcare
professionals may have avoided discussing sexual contact as a driver of Mpox transmission to avoid stigmatizing the gay and bisexual community, among whom the initial cases of Mpox occurred. However, avoiding classification of the virus as an STI misinforms people who are at higher risk of contracting the virus through sex.
“Sometimes not talking about something is its own form of stigma: homophobia,” Dr. Thrasher said.
Public health information should have placed more focus on cautioning individuals about exposure during sexual activity. By making repetitive statements that the disease could not be sexually transmitted, the illusory effect allowed people to believe these statements were true.
Likewise, when elected officials repeatedly share misinformation to further discriminatory political agendas, they often misguide communities. Episode 2 of The E(Queer) ity Podcast, titled “Gender Affirming Care Demands Equity”, features guest Chanel Haley who is the Director of Education and Community Engagement for Georgia Equality. Her work has focused on bridging gaps in gender-affirming care for minors. We discussed how legislators often make false claims, such that parents should be blamed for children questioning their gender and/or
that medical associations recommend surgery for all transgender youth. But the journey to obtaining gender affirming care for minors could not be stricter and more conservative for young individuals.
“The decision is made with the minor, the parent, their mental health professional and a medical doctor,” Chanel stated. “There [are] always rules in place.”
The criteria for establishing a gender incongruence diagnosis is well-established in the Diagnostic and Statistical Manual of Mental Disorders (DSM-5).5 In addition, the World Professional Association of Transgender Health-8 provides seven different criteria that adolescents must meet in order to be considered for surgery, including, but not limited to, experiencing gender diversity or incongruence over time, addressing mental health concerns, and being informed of the reproductive effects.6
In fact, growing evidence suggests that adolescents may benefit from receiving hormone and/or surgical treatments on an individual-need basis rather than on an agecutoff basis.7 For example, the decision to undergo top surgery can vary from adolescent to adolescent, depending on their goals, maturity, and understanding of the process and what they want to pursue. Despite misguided statements made by lawyers and
RENEE BROWN (SHE/THEY) is a multi-published scientific author and second year MD/MPH student at the Feinberg School of Medicine. They are also the host of The E(Queer)ity Podcast, an educational, interview-style show where they discuss the efforts that people have led to dismantle LGBTQ+ health inequities. They plan to serve as a physician and public health executive.
X: @equeeritypod, @ren33brown
Instagram: @equeeritypodcast
legislators comparing gender transition in youth to child abuse, medical and/or surgical treatment for gender dysphoria is a long and thoughtful process—one that ultimately aims to improve the physical and mental health of patients and families.8,9
To avoid spreading misinformation, we first need more representation. We need wellinformed research practices that include the voices of queer people by increasing the number of community advisory boards (CABs) that participate in public health research. CABs consist of members who share a unique sense of belonging to the project being investigated and can lend an influential voice in decisionmaking.
A great example of this is the Gender Pathways Program at Northwestern Medicine, which has a running CAB that is representative of transgender and gender diverse people who meet often to review ongoing research. Without greater representation, more patients will fall through the cracks. In an analysis of the 2014-2016 Behavioral Risk Factor Surveillance System (BRFSS) dataset, an ongoing telephone interview survey conducted by the Centers for Disease Control and state health departments, 30 percent of transgender men and women, respectively, had a misclassified sex assigned
at birth because screeners used the voices of respondents for identification purposes.10 As a result, screeners conflated sex and gender, followed the wrong question protocol for these individuals, and input systematically biased results. Including a gender diverse CAB in the decision making process for this study would likely have prevented this bias.
More structural changes are already underway or will be coming soon to benefit the queer patient population. For example, asking patients to self-identify their gender and provide a range of options to do so is now supported, as seen within the recent “X” legal change at Northwestern Medicine.11 By allowing this designation, which follows the larger approval of an “X” designation to licenses in Illinois, this change can be affirming for non-binary or agender people who receive medical care.
To further decrease misinformation, we should provide meaningful training for healthcare providers to feel comfortable navigating LGBTQ+ care, starting early in their preclinical and clinical years. We should also empower members of the queer community to become health practitioners, health care researchers, and/or policy advocates themselves. In pursuing these endeavors, the healthcare
landscape for LGBTQ+ patients looks brighter.
Still, without changing hearts and minds, structural changes to our healthcare system fall short. Tackling misinformation starts from looking inside ourselves and confronting what we do not know with curiosity and compassion, rather than with fear and assumption.12 We should challenge the biases that we have towards our family and friends within the queer community.
Queer people live in a myriad of situations: families of same-sex partners with children; bisexual individuals who take PrEP; minors experiencing gender incongruence in unsupportive environments. Any queer person in these situations requires displays of support from loved ones as well as the wider healthcare sector. Allyship in its truest form emphasizes affirmation, not tolerance.
Only through unwavering support of the lived experiences of LGBTQ+ people can the journey towards combating misinformation begin. ●
1. van der Linden S. Misinformation: susceptibility, spread, and interventions to immunize the public. Nat Med. 2022;28(3):460-467.
2. Meyer BA. Monkeypox Is Not a Sexually Transmitted Infection: What Experts Want You to Know. Healthline. https://www.healthline.com/ health-news/monkeypox-is-not-a-sexually-transmitted-infectionwhat-experts-want-you-to-know
3. Opdycke A, Figora L. Information about Monkeypox: Planning our approach to preparation and prevention. Northwestern University Published August 9, 2022. Accessed December 21, 2023. https:// www.northwestern.edu/leadership-notes/2022/information-aboutmonkeypox.html
4. Allan-Blitz LT, Gandhi M, Adamson P, Park I, Bolan G, Klausner JD. A Position Statement on Mpox as a Sexually Transmitted Disease. Clin Infect Dis. 2022;76(8):1508-1512.
5. Turban J. What is Gender Dysphoria? American Psychiatric
Association. Published August 2022. Accessed December 21, 2023. https://www.psychiatry.org/patients-families/gender-dysphoria/ what-is-gender-dysphoria
6. Coleman E, Radix AE, Bouman WP, et al. Standards of Care for the Health of Transgender and Gender Diverse People, Version 8. Int J Transgend Health. 2022;23(Suppl 1):S1-s259.
7. McDougall R, Notini L, Delany C, Telfer M, Pang KC. Should clinicians make chest surgery available to transgender male adolescents? Bioethics. 2021;35(7):696-703.
8. Henry M. Lawmaker behind bill blocking gender-affirming care believes care is ‘child abuse’. Ohio Capital Journal. Published November 16, 2023. Accessed December 21, 2023. https://ohiocapitaljournal. com/2023/11/16/lawmaker-behind-bill-blocking-gender-affirmingcare-believes-that-kind-of-care-is-child-abuse/
9. Attorney General Bailey Files Suit Over St. Louis Pediatric
Transgender Center’s Refusal to Turn Over Records. Misssouri Attorney General Office. Published 2023. Accessed December 21, 2023. https:// ago.mo.gov/attorney-general-bailey-files-suit-over-st-louis-pediatrictransgender-centers-refusal-to-turn-over-records/
10. Tordoff D, Andrasik M, Hajat A. Misclassification of Sex Assigned at Birth in the Behavioral Risk Factor Surveillance System and Transgender Reproductive Health: A Quantitative Bias Analysis. Epidemiology. 2019;30(5):669-678.
11. Arougheti I. At Northwestern Medicine, nonbinary patients can now record their legal sex as ‘X’. Chicago Tribune. Published January 2, 2024. Accessed May 15, 2024. https://www.chicagotribune. com/2023/12/29/at-northwestern-medicine-nonbinary-patientscan-now-record-their-legal-sex-as-x/
12. Ecker UKH, Lewandowsky S, Cook J, et al. The psychological drivers of misinformation belief and its resistance to correction. Nat Rev Psychol. 2022;1(1):13-29.
In the Absence of Information
Sophia Huang
INTRODUCTION
The first time most people learn about vaccinations or flu shots is at the doctor’s office. We look to healthcare providers for guidance on everyday medical concerns and complex care decisions. As a result, healthcare providers are one of the primary sources of health awareness in the U.S.
However, on some politically charged topics, the government has taken it into their own hands to determine what can or cannot be discussed in the doctor’s office. For example, Florida has banned physicians from bringing up gun ownership and Texas has limited discussions on abortions. In some cases, these are done to protect patient health safety, such as in the case of bans on the practice of conversion therapy.
However, in other cases, bans limit the information available to patients and obstruct the patient’s ability to make informed decisions.
In such cases, the absence of information places patient health and safety at stake.
FIREARM SAFETY
In 2011, Florida passed the Firearm Owners Protection Act (FOPA), prohibiting doctors from discussing firearms or guns with their patients. Those who did could face a fine of up to $10,000 and risk losing their medical license.1 Proponents believed this law would protect Second Amendment rights. In a letter to its members, the National Rifle Association stated, “It is a political agenda to ban guns. Parents do not take their children to physicians for a political lecture against the ownership of firearms. They go there for medical care.”1
Legal challenges from both sides continued debating the constitutionality for many years. A federal appeals court ultimately overturned several provisions of FOPA in 2017, citing concerns about freedom of speech. As one of the judges who voted to strike down the law, William Pryor stated, “The profound importance of the Second Amendment does not give the government license to violate the right to free speech under the First Amendment.”1
But it is not just about protecting first amendment rights. It’s also about protecting public health and public safety. The FOPA infringed on a physician’s responsibility to
provide information important for patient health. Dr. Andrew W. Gurman, president of the American Medical Association2 at the time, stated that “counseling patients we care for makes a difference in preventing gun-related injuries and deaths.”3
Many gun-related deaths in the U.S. could be prevented if there was greater awareness of safe firearm storage practices, such as storing a gun locked and unloaded and storing ammunition separately.4 One study analyzing gun-related deaths from 2009 to 2018 found 279 cases in which a child less than 15 years old died unintentionally due to a firearm injury. Of those, more than two-thirds happened in the victim’s home with a gun that belonged to a relative, and almost half involved a child 2 to 4 years old.5
Yearly check-ups can be a good place to bring up these kinds of discussions.
These discussions are not meant to discourage patients from using firearms, but rather, bring up the idea of gun safety and encourage patients to use safe handling and storage practices to prevent unintentional deaths.
Dr. Eric Fleegler, a professor of pediatrics and emergency medicine at Harvard Medical School, said that when he asks parents about gun safety in homes, most respond with, “I hadn’t thought of that.”5
In a press release published soon after the federal court struck down the law, the AMA stated, “Longstanding AMA policy supports physician consultations about firearm safety and risks to help patients safeguard themselves and their families from accidents.
The court agreed that in the fields of medicine and public health, information saves lives.”2
In the case of firearm safety, communication and information can save lives and could have prevented some of the gun-related deaths of those 279 children. It is important for this kind of discourse to happen in the doctor’s office, and bans on such discussions will only cause more harm.
THE A-WORD
However, firearm safety is not the only topic that has been banned from primary care appointments. Abortion laws can also be restrictive to the point where some physicians no longer feel comfortable discussing the option of abortion with their patients.
In 2021, Texas passed a heartbeat bill, prohibiting physicians from performing an abortion on a baby once a fetal heartbeat is detected, which occurs around 6 weeks.6 A section of this law prohibits healthcare providers from “aiding and abetting” an abortion at the risk of losing their medical license. Some physicians have interpreted this to mean that they cannot mention the word abortion to their patients.7 One doctor said, “If a patient’s grandmother and or partner or sister finds out that I’ve talked to them about an abortion…all they have to do is find a lawyer and all of a sudden I’m ‘aiding and abetting’ someone into an abortion.”7
Many physicians are scared that simply providing information will be considered helping a patient get an abortion and will be punishable by the heartbeat bill. Some have turned to using cryptic messages to tell their patients to seek care in another state. This includes statements like, “The weather’s really nice in New Mexico right now–you should go check it out,” or “I’ve heard traveling to
Colorado is really nice this time of year,” or “You can’t do anything in Texas and I can’t tell you anything further in Texas, but you need to get out of state.”7 This vagueness forces patients to pick up on clues and then figure out transportation and funding to travel out of state, which not only delays essential care for patients, but also places the burden of finding help on the patient.
Lauren Miller, a mother who ultimately had to go out-of-state to get an abortion for medical reasons, believes that Texas and its restrictions prevented her doctors from doing more to help her. After reflecting on her experience in an interview with NPR, she said, “They would have just been able to give information freely, get it scheduled. It wouldn’t become this whole agonizing process of just trying to get information of—what do we actually need? Where do we go?”7
In an interview with NPR, Dr. Eve Espey, chair of the obstetrics and gynecology department at the University of New Mexico, recalls how it took six weeks for one of her patients, whose fetus had a fatal condition, to save enough money and figure out how to travel to another state for an abortion. Because of this delay, the patient ended up hemorrhaging and needed a hysterectomy to survive.7
Restrictions that prevent
physicians from providing important healthcare information prevents physicians from doing what they were trained to do.
More importantly, withholding information can exacerbate already high barriers to accurate health information and proper care.
BANS ON CONVERSION THERAPY
However, bans on harmful practices can also be protective. Many states, like California, Oregon, and Illinois, have banned conversion therapy, or the practice of attempting to alter a person’s sexual and gender identity8 that often uses violence or humiliation.9 However, there is no strong evidence that suggests conversion therapy can alter sexual orientation or gender identity.10 In 2018, the state of Washington banned the practice of conversion therapy for people under 18.11
Opponents of this law believed that people should have the right to hear their options. In support of hearing a case against Washington’s conversion therapy ban, Supreme Court Justice Clarence Thomas wrote, “licensed counselors can speak with minors about gender dysphoria, but only if they convey the state-approved message of encouraging minors to explore their gender identities. Expressing any other message is forbidden –even if the counselor’s clients ask for help to accept their biological sex.”12
However, conversion therapy can be incredibly harmful. A study found that
1. Hersher R. Court Strikes Down Florida Law Barring Doctors From Discussing Guns With Patients. NPR. Published February 17, 2017. Accessed March 15, 2024. https://www.npr.org/sections/thetwoway/2017/02/17/515764335/court-strikes-down-florida-law-barringdoctors-from-discussing-guns-with-patient
2. American Medical Association. AMA praise court ruling on Florida gun gag law. AMA. Published February 17, 2017. Accessed March 15, 2024. https://www.ama-assn.org/press-center/press-releases/amapraise-court-ruling-florida-gun-gag-law
3. O’Reilly KB. Florida “gun gag” law provisions struck down by appeals court. AMA. Published February 23, 2017. Accessed March 15, 2024. https://www.ama-assn.org/delivering-care/public-health/floridagun-gag-law-provisions-struck-down-appeals-court
4. American College of Surgeons and the Committee on Trauma. Firearm Safety and Patient Health: A Proactive Guide to Protecting Patients and their Families. https://www.facs.org/media/1mtadqiv/22_ tr_pdf_firearminjuryprevention_interactive_6a_release.pdf
5. CBS News Miami. Most accidental shooting deaths among children involve guns left loaded and unlocked, study finds. CBS News. Published June 6, 2023. Accessed March 15, 2024. https://
transgender individuals who have been exposed to conversion therapy before the age of 10 were four times more likely to report a suicide attempt in their lifetime compared to transgender individuals who were never forced to undergo conversion therapy.13 AMA board member Dr. William E. Kobler said in a statement backing a nationwide ban, “It is clear to the AMA that conversion therapy needs to end in the United States given the risk of deliberate harm to LGBTQ people… Conversion therapy has no foundation as scientifically valid medical care and lacks credible evidence to support its efficacy or safety.”13
By banning conversion therapy, states have blocked rhetoric that encourages its discussion and practice, both of which can inflict harm on patients. In cases like these, bans can prevent the spread of information about harmful practices, especially those that target marginalized populations and those that are not backed by any scientific literature or medical guidelines.
6. Simmons-Duffin S, Feibel C. The Texas abortion ban hinges on “fetal heartbeat.” Doctors call that misleading. NPR. Published September 2, 2021. Accessed March 15, 2024. https://www.npr.org/sections/healthshots/2021/09/02/1033727679/fetal-heartbeat-isnt-a-medical-termbut-its-still-used-in-laws-on-abortion
7. Simmons-Duffin S. 3 abortion bans in Texas leave doctors “talking in code” to pregnant patients. NPR. Published March 1, 2023. Accessed March 15, 2024. https://www.npr.org/sections/healthshots/2023/03/01/1158364163/3-abortion-bans-in-texas-leavedoctors-talking-in-code-to-pregnant-patients
8. Mayorquin O. What is conversion therapy? Supreme Court to weigh in on practice many states have banned. USA Today Published June 15, 2022. Accessed March 15, 2024. https://www. usatoday.com/story/news/nation/2022/06/15/conversion-therapyexplained/7635036001/
9. Tsoulis-Reay A. What It’s Like To Experience Gay Conversion Therapy. The Cut. Published January 24, 2018. Accessed March 15, 2024. https:// www.thecut.com/2018/01/conversion-therapy-experience.html
rights for patients and physicians.
However, when information is delivered with a political agenda, not a medical or public health agenda, it can be difficult for patients to determine what is true, false, beneficial, or detrimental.
This then infringes on patient autonomy, one of the pillars of medical ethics, and perverts the informed-decision making process.
Whether it is restricting the discussion of gun safety, withholding information about abortions, or banning the practice of conversion therapy, the laws and regulations politicians make regarding how physicians communicate with patients can have a powerful effect on the provision of healthcare, the preservation of patient autonomy and safety, and the availability of health information. It is thus important to examine the impact of both the presence of inaccurate information and the absence of accurate information. ●
10. Government Equalities Office. An assessment of the evidence on conversion therapy for sexual orientation and gender identity. GOV. UK. Published October 29, 2021. Accessed March 15, 2024. https:// www.gov.uk/government/publications/an-assessment-of-theevidence-on-conversion-therapy-for-sexual-orientation-and-genderidentity/
11. Lucia B. Supreme Court declines to hear challenge to WA ban on “conversion therapy” for minors • Washington State Standard. Washington State Standard. Published December 11, 2023. Accessed March 15, 2024. https://washingtonstatestandard.com/2023/12/11/ supreme-court-declines-to-hear-challenge-to-wa-ban-onconversion-therapy-for-minors/
12. Hatch J. Supreme Court denies conservative challenge to California ban on conversion therapy. Sacramento Bee. Published December 11, 2023. Accessed March 15, 2024. https://www.sacbee.com/news/ politics-government/capitol-alert/article282919528.html4
13. Fitzsimons T. American Medical Association backs nationwide conversion therapy ban. NBC News. Published November 21, 2019. Accessed March 15, 2024. https://www.nbcnews.com/feature/nbcout/american-medical-association-backs-nationwide-conversiontherapy-ban-n1088731
NATHAN WALTER, PHD is an Associate Professor in the Department of Communication Studies at Northwestern University. He is also the CoDirector of the Center of Media Psychology and Social Influence (COMPSI). His research studies mass media, communication ecologies, strategic storytelling, and misinformation. What follows are excerpts from an interview, in which Walter discusses the influence of cognitive biases, the role of nudges, and the importance of slowing down.
A Conversation on Slowing Down
An Interview with Dr. Nathan Walter
Meilynn Shi
MEILYNN SHI (MS): A lot of your work examines instinctive human biases, such as perceiving greater risk of contracting COVID-19 if your friend contracts COVID-19 or accepting more opinion-based claims as fact-based claims when they’re congruent with your own beliefs. In your recent seminar, you also walked through various scenarios that point to our tendency to create mental models and stories to make sense of the world, as well as our tendency to gravitate towards what’s fluent, easy, and familiar. Can you talk more about why we tend to fall back upon these biases, especially when there are medical, social, and political consequences?
Lily Reid Artist
Lily Reid is a passionate biomedical visualization student at the University of Illinois Chicago. She finds joy in translating complex scientific concepts into visually engaging and informative illustrations. Her specialization revolves around medical illustration, graphic design, and visual techniques focused on communicating medicine to patient and general audiences.
NATHAN WALTER (NW): These biases have been part of what helped us survive as human beings for much longer than we had medicine, risk factors, numbers, or statistics. We can be very logical and very rational, but we sometimes just can’t help it because our default is not to think very carefully or elaborately on the information [before us]. If you think about all the information that we get every second, our brain is able to process just a tiny, tiny, tiny fraction of that. We basically have to rely on mental shortcuts, on things that are easy to process, and what tends to be easy to process can also lead to biased conclusions.
MS: In some ways, I find that thinking about this is a bit pessimistic because it suggests that the way things are right now are because we are the way we are, because humans are the way we are. But I also know that there are ways to overcome these biases, retrain the way we think, and exploit these biases. What do you think are the solutions for addressing these biases and addressing misinformation?
NW: On the one hand, I agree with you that it’s pessimistic in the sense that it doesn’t offer an easy solution like, let’s say, a technology, an algorithm, or one policy that would change and all of a sudden misinformation would be a problem in our history books. On the other hand, I find it a little bit optimistic because it also tells us that misinformation has always been around going back to the hunter-gatherers, and we were able to survive and thrive. Although we commonly hear things like misinformation is everywhere and this is as misinformed as we’ve ever been—that’s probably not true.
The first thing that we need to recognize is we need to accurately diagnose the problem. The problem is not TikTok, it’s not social media, it’s not Donald Trump, it’s
not lack of education in the narrow sense, and it’s not the way that we present information about vaccines. We’re the problem. We are creatures that are very good at processing certain things and not so good at processing other things.
The solution is to stop. It’s to slow down and recognize our own biases.
When we wake up in the morning and we see in our inbox an e-mail that says, “I’m a Nigerian Prince and if you do this you will get all my money,” and we know that we should probably not book that flight to Nigeria— we should do the same thing when we decide what to share on social media and what to tell our friends.
I often ask my students, how long does it take you to decide whether to share or not to share something, let’s say, on Instagram or Facebook? Twenty seconds. That’s not enough time to read carefully or even read not very carefully. That tells me that there are certain cues that we look for to make these intuitive decisions. What are these cues? If something agrees with us, or if something looks like something that we would post. Most links that are retweeted on X have never been opened. What does it tell us? That people are just sharing without really slowing down and carefully asking themselves these questions.
We don’t need to be medical experts. We don’t need to ask ourselves, is RNA really the best approach here? Because we don’t know. I don’t know. What we do need to ask ourselves is, why am I so eager to believe this or why is it so difficult for me to believe this?
MS: Are we able to slow down and think through these questions, especially since a lot of the reasons why
biases work is because we fall into automated processes of thinking, especially during moments that require quick action?
NW: Theoretically, the answer is yes because there’s a lot of research, not only in the U.S. but also in many different countries, showing that by [providing] nudges toward accuracy, people are able to slow down and make better decisions. For instance, in research in which people have to decide what to share on social media, the simple nudge of “how credible is this information?” basically transforms what people decide to share and not to share. This finding has at least two implications. First, the implication is it’s not natural for us to think about accuracy if we need to be prompted to do that. That’s troubling. The second is if there’s a way for social media platforms to nudge us in some organic way without moderating the content that much, that could be very helpful.
We’re not asking social media to fact-check everything and tell us, are you sure you want to share this false thing? We just want social media to train us to be a little bit more informed by [asking us to think] about credibility.
MS: Do you think these nudges will have to come from the social media platforms?
NW: No, I’m not that naive. I think that there needs to be a combination of policy change, some kind of collaboration with media platforms and media technology, and a rethinking of education around misinformation.
Right now, we live in a society in which the click economy is based on views, shares, and engagement. If you are a non-institutional actor knowingly sharing
disinformation, there are no repercussions. When the economy encourages engagement, there are no repercussions for spreading disinformation. And wouldn’t it be wonderful if you could just “make up stuff” because then it’s new, you can get people angry, it’s a better story, and you’re not committed to anything in reality. So something has to change in that nexus of education, technology, and policy.
MS: What are the ways that we can use stories and anecdotes to reframe the ways we think about information and share information?
NW: There’s an objective way to statistically prove that by sheer chance, “x” number of kids will show the first signs of autism 48 hours after they get the MMR [Measles, Mumps, Rubella] vaccine. Ostensibly, that [statistic] could be the end to misinformation about vaccines. But it’s not, and it’s not because this is not how humans think.
We think about it in terms of stories, in terms of anecdotes, and when you’re fighting anecdotes with numbers, you’re always going to lose.
If you’re telling parents that there’s a 99% chance that nothing will happen—even if it’s 99.99%— the only thing that I’m thinking about is that there’s a chance that it could happen. [But] we don’t hold anecdotes to that standard. We recognize that it’s just one person and one experience, but it’s also so vivid and so emotional. Stories are very, very powerful. We shouldn’t be afraid to use anecdotes as health experts. Although it’s wonderful to show the numbers and cite the latest research that was published on the topic, our patients are not likely to remember that. ●
Health Conspiracies and the Struggle to Make
Meilynn Shi
My dad turns off the Wi-Fi at 10:30 every night.
He bought an automatic timer last month so he can’t forget. He wants to minimize the amount of time our bodies are exposed to the electromagnetic fields generated by Wi-Fi signals. It has nothing to do with education (he has a graduate degree…in computer science) or irrational thought (studies have looked at the effect of phones on sperm count). It’s how he copes with something unfamiliar.
During the past few years, more and more health conspiracies and conspiracy-like ideas have found their way into the spotlight. COVID-19 generated a new thread of conspiracies, partly in response to emerging mRNA technology. There were theories about vaccines injecting 5G microchips that Big Tech and Big Brother were using for surveillance. There was Donald Trump suggesting we inject bleach to kill the virus. There were people declaring that COVID-19 wasn’t real and neither were the death rates. There were also the usual conspiracies igniting anti-vaxx and anti-pharma and anti-establishment furor.
Studies found that increased exposure to conspiracy theories led to increased reluctance to engage in COVID-19 prevention measures, such as social distancing and vaccination, along with increased willingness to engage in alternative treatments, such as chloroquine
and garlic.1 Such phenomena are not specific to COVID-19 either.2
Health conspiracies often sound similar to the messaging associated with alternative health movements and wellness culture, terms that broadly encompass everything from yoga to acupuncture to reiki. Wellness culture arose from 1960s counterculture that sought to experiment with holistic practices and increase access to healthcare.3
But today, wellness culture is primarily dominated by chatty influencers promoting trends on unregulated platforms whose engagement-driven algorithms tend to generate virtual hive minds. This creates fodder for conspiracy theories, sometimes in alignment with far-right politics.3 Not only does this debase alternative medicine practices that can actually help people, but this also creates demand for people like Dr. Oz and Alex Jones who consistently make unsubstantiated and misleading claims.4 And nothing feeds the misinformation beast more than an audience and a market.
But it’s not helpful to deride conspiracy believers as outright delusional. That’s not entirely fair. Conspiracy theories have a long history rooted in distrust of political elites
Make Sense of the Unfamiliar
and central authority. They are attempts to understand sociopolitical events, especially during times of upheaval, by claiming that people in power are colluding for malevolent purposes.5
Conspiracy theories share four principles: they are universal in that they are not specific to a group of people or to a period of time but rather part of fundamental human survival mechanisms; they are emotional in that they are a product of emotion-driven sense-making processes that often draw upon automatic cognitive systems; they are social in that they seek to uphold collective identity and protect the ingroup from the outgroup; and they are consequential in that they influence the way individuals and groups decide to act.6
Many false beliefs, even those that do not qualify as conspiracy theories, share similar principles and similar consequences. In some ways, those that contain the vaguest hint of plausibility are the most insidious because they exist in a grey area between what is true and what is not.
1. Bierwiaczonek K, Gundersen AB, Kunst JR. The role of conspiracy beliefs for COVID-19 health responses: A meta-analysis. Curr Opin Psychol. 2022;46:101346.
2. Oliver JE, Wood T. Medical Conspiracy Theories and Health Behaviors in the United States. JAMA Intern Med. 2014;174(5):817-818.
3. Baker SA. Alt. Health Influencers: how wellness culture and web
But no matter where they lie on a spectrum of truth, they all stem from the same sentiment: fear of the unfamiliar. They are driven by epistemic crises and existential threats—things we all experience.2,5
Preserving truth and building trust is not about censuring all falsehoods and all believers. Not only is the line between free speech and dangerous speech too amorphous–that’s why we can’t just ask Google and Mark Zuckerberg to censor all sources of misinformation–but it’s also not about us versus them. We are all prone to believing in conspiracy theories and conspiracy-like ideas.
Rather, whether it’s in medicine, politics, or
culture have been weaponised to promote conspiracy theories and far-right extremism during the COVID-19 pandemic. Eur J Cult Stud 2022;25(1):3-24.
4. Korownyk C, Kolber MR, McCormack J, et al. Televised medical talk shows—what they recommend and the evidence to support their recommendations: a prospective observational study. BMJ 2014;349:g7346.
daily life, it’s foremost about understanding why someone chooses to think the way they do. Most of us don’t respond to scientific literature or hard evidence. We respond to our own versions of truth, versions based on our individual lived experience and on our shared struggle to be human.
Fifty years from now, I wonder how I’ll cope with a technologically unfamiliar world. When artificial intelligence (AI) has found a grip on most parts of our lives, I can imagine myself being distrustful of any information—I’m already wondering if the Reddit video of a Russian man brushing a bear’s teeth is just a figment of the AI imagination. When that happens, I might also find myself turning off the Wi-Fi at 10:30 every night, in part to get off the grid, maybe also in part to avoid unnecessary electromagnetic radiation. Deep down, we all have a voice like this, a voice that is anxious about the unfamiliar and unsure of the science. And that’s okay. We should talk about it with each other because we’re all just trying to make sense of the same things. ●
5. Douglas KM, Uscinski JE, Sutton RM, et al. Understanding Conspiracy Theories. Polit Psychol. 2019;40(S1):3-35.
6. van Prooijen J-W, Douglas KM. Belief in conspiracy theories: Basic principles of an emerging research domain. Eur J Soc Psychol 2018;48(7):897-908.
About NPHR
The Northwestern Public Health Review is a studentrun organization founded in 2013 to share and stimulate multi-disciplinary conversations about current public health issues. Through our print issues, blog, and campus events, we hope to help the Northwestern and broader Chicago community achieve greater health equity.
PARTNERSHIP WITH BVIS
Founded in 1921 by Thomas Smith Jones, the Biomedical Visualization (BVIS) graduate program at the University of Illinois at Chicago is one of only four accredited graduate programs in North America that provides professional training for careers in the visual communication of life science, medicine, and healthcare. The program’s curriculum provides a foundation in medical science, learning theory, and innovative visualization techniques, with the opportunity to explore new fields in animation, interactive media, educational gaming, stereography, haptics, and augmented reality. This journal issue is the eighth time that BVIS students have contributed editorial illustrations to the Northwestern Public Health Review
