NPHR Winter 2025 - Misinformation

NPHR

Misinformation 1

Winter 2025 Issue

N

Claire Sun Cover Artist

ARTIST STATEMENT 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

NPHR Table of Contents Misinformation

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Letter from the Editor

6

The Democratization of Medical Knowledge Meilynn Shi

10

A Conversation on Local News An Interview with Penny Abernathy

14

Crisis Pregnancy Centers Caroline Clingan

20

Health Communication Strategies Brandon Boyle, Lili Bui

22

A Conversation on Community Trust An Interview with Dr. Karen Sheehan

24

Combating Misinformation in LGBTQ+ Health Renée Brown

27

In the Absence of Information Sophia Huang

31

A Conversation on Slowing Down An Interview with Dr. Nathan Walter

34

Health Conspiracies Meilynn Shi

3

Letter from the Editor

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

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next four pieces focus on specific areas that

This is by no means an exhaustive review, but

have been prone to inaccurate and misleading

it is an attempt to reflect on the past, present,

information: reproductive justice and the

and future state of information and knowledge.

workings of crisis pregnancy centers; LGBTQ+

More importantly, it is an attempt to challenge

health and the repercussions of under- and

our readers to ask how we balance access and

mis-representation; gag laws and the effects

accuracy and how we decide (or who should

of the absence of information; and health

decide) what is true, what is not, and perhaps,

conspiracies and their roots in sense-making

what is neither. The world is changing rapidly,

cognitive processes.

and it is often hard to keep apace. But good discussion—critical discussion that does not

Throughout, we also include interdisciplinary

just exist in academic spheres—will help us

conversations on how we got here and

face the brave new world ahead.

where we go from here. We speak with Penny Abernathy about the importance of

In Health,

supporting local news and ensuring equitable

Meilynn Shi

access to information; Dr. Karen Sheehan

Editor-in-Chief

about the nuances of public health messaging

Northwestern Public Health Review

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.

5

The Democratization of Medical Knowledge Meilynn Shi

Everyone’s talking about Ozempic, the drug that can drop your weight by 15

to $20,0003 and finding slightly different

percent, lower your risk of heart attack and

versions through compounding pharmacies,

2

stroke by 20 percent, startle stock markets,

medical spas, and social media.8 Those who

reduce alcohol and tobacco tax revenue, and

can’t afford it are turning to natural remedies

save airlines thousands in fuel costs (and not

like

just because of blown-off doors).3 Ozempic and

medications that have been historically abused

other GLP-1 agonists are changing guidelines

like laxatives (“Budget Ozempic”).9 Those who

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on medical management for type 2 diabetes,

need Ozempic to control their blood sugars

are becoming part of management for heart

are struggling to fill their prescriptions.3 All the

failure with preserved ejection fraction

while, we don’t yet have long-term outcomes

(HFpEF), may soon become part of care for

data for people using Ozempic for indications

Alzheimer’s due to its anti-inflammatory

outside of diabetes.

1

5

berberine

(“Nature’s

Ozempic”)

or

effects (effects that will have broad-reaching 6

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

It has all become another instance of how directto-consumer advertising (DTCA), patient activism, and social media have transformed our relationship with medicine.

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

6

DTCA began in the 1980s as a way to tap into

the patient’s consumer power.10 Previously,

power asymmetries, and a long history of

prescription drugs were only advertised

abuses. The Civil Rights Movement soon

to physicians, primarily due to 1) a 1951

brought new momentum to feminist health

amendment

prescriptions

activists, cancer activists, patient rights

for potentially dangerous drugs and 2) the

that

required

activists, and “groups that construct identities

American Medical Association’s (AMA) efforts

around particular disease categories and

to discourage patients from using alternative

assert political claims on the basis of those

treatments, which were not always as effective

new identities.”11

and would, more importantly, obviate the need to see a physician. Soon, physicians

During the 1980s, HIV activists, frustrated with

were inundated by advertisements that went

political and medical inaction, took matters

essentially unregulated because physicians

into their own hands. They established buyers

were considered capable of evaluating an

clubs to distribute experimental treatments

advertisement’s merits on their own.

that had not yet been FDA-approved. They focused on learning the medical language

It wasn’t until the 1960s, when thalidomide,

and establishing their credibility, soon gaining

a medication initially promoted for morning

positions on federal committees, institutional

sickness, was found to cause serious birth

review boards, and pharmaceutical advisory

effects, that the Food and Drug Administration

boards, where they could have a direct say in

(FDA) overhauled regulations and increased

how clinical trials were conducted and how

oversight over drug approval, labeling, and

therapies were approved. Many sociologists

marketing.

Then in the 1980s, amid the

credit HIV activists for opening up the space

fervor of the civil rights and patient rights

for non-medically trained individuals to have

movements,

expert voices in medical matters.11

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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

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.

than themselves when it came to evaluating the risks and benefits of a drug, and even

Even when the FDA tried to reign back drug

pharmaceutical companies were wary of

advertising in the 1990s, it was met with

upsetting the traditional physician-patient

political backlash from people who wanted

relationship and causing public confusion

innovation to happen faster and wanted

about a drug.

Moreover, advertisements

medical information to be more accessible.10

often made misleading claims about efficacy

The FDA was forced to overhaul its regulations

and side effects, and air times were not long

yet again. Instead of including extensive

enough to talk about every important detail.

summaries of side effects, contraindications,

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and effectiveness, as was required in the past, At the same time, distrust in physicians was

advertisements could now refer consumers

growing. Medicine was a fundamentally

to a phone number, print advertisement,

paternalist institution, with selective access,

website, pharmacist, or physician to obtain

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The Democratization of Medical Knowledge

any necessary information.

Purdue Pharma in the opioid epidemic,18 now intentionally avoid attending pharmaceutical-

Today, as many as 80 drug commercials air

sponsored lunches and dinners. For any

each hour. We see drug advertisements so

lectures, presentations, and publications,

often it’s easy to forget that the U.S. and New

physicians are required to disclose all conflicts

Zealand are the only countries that allow

of interest, especially if they receive relevant

DTCA.10

funding from pharmaceutical or biotech

12

companies. Young, attractive women are also Many studies have since been conducted

no longer intentionally recruited as drug reps

on DTCA. Some have found that exposure to

(“pharma babes”) and device reps.19

advertisements can increase its perceived efficacy,13 increase willingness to pay higher

The future of medicine will involve even more

costs,14 and lead to over-prescription.15 Some

patient engagement. We’re already seeing an

have found that it can increase care continuity

augmented version of patient-centered care

with

and

in precision medicine, in which molecular

providers,16,17

reduce

prevent under-prescription.

stigma,

But exposure

and genetic signatures can be harnessed

to advertising can be challenging to measure,

to individualize therapies. We’re seeing the

especially in an era of social media.

growth of direct-to-consumer (DTC) genetic

15

testing, which may potentially pave the

In some ways, it is ironic that as directed advertising toward consumers has increased, directed advertising toward physicians has decreased.

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

Physicians, more aware of the insidious

in our social history and values. But we have to

effects of marketing, especially following

address the potential harms. When 23andMe

coverage of the role of the Sackler family and

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.

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

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.

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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.

Shi

science was still evolving. But that didn’t stop

Some HIV activists in the 1980s felt similarly

people from purchasing tests and showing up

torn

to their doctor unnecessarily anxious about

participatory democracy are automatically

single

nucleotide

polymorphisms

about

“whether

mechanisms

of

(SNPs)

of value in the struggle to develop effective

that were reportedly linked to increased risk

therapies or whether scientific ‘progress,’

of Alzheimer’s or cancer. The problem was

however understood, might indeed be

that much of the data on SNPs was based on

facilitated by an ‘antidemocratic’ reliance on

statistical correlations, not necessarily on well-

relationships of trust and authority and by

studied biological mechanisms.22,23

the delegation of science to ‘the experts.’”11 Democratization of information keep us out

When there is no clear answer and no one person or group to turn to for credible information, we are particularly susceptible to misinformation.

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

Ozempic is not a new drug, but we do not

information. That is largely a responsibility

yet understand all of the science, such as its

of

long-term effects on metabolism and appetite

companies,

regulation.

Moreover,

because

physicians,

scientists,

and

pharmaceutical

government

agencies.

popular

But as patients play a bigger role in their

demand has been high, people have been

own medical decision-making, they will

vulnerable to unregulated and misleading

inevitably share some of the responsibility in

marking campaigns, such as efforts by

determining what and who are credible. It’s

compounding pharmaceuticals and medical

a messy balance to find. But maybe instead

spas to sell similar drugs.24,25 Regulations will

of talking more about Ozempic or the latest

need to adapt once again, but it will take time

triumph, we can talk more about the gray

to catch up with social change, and regulations

areas, the history, the conundrums. That won’t

are often not enough.

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.

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.

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.

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.

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.

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.

17. Holmer AF. Direct-to-consumer prescription drug advertising builds bridges between patients and physicians. JAMA. 1999;281(4):380-382.

23. Sherkow JS, Park JK, Lu CY. Regulating Direct-to-Consumer Polygenic Risk Scores. JAMA. 2023;330(8):691-692.

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/

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.

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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

percent of the profits. Most of us made the assumption

year, you wrote, “Through it all, I’ve come to appreciate

that if newspapers could just transition to a digital

that the largest news organizations in the country

format, they would be okay.

are only as vibrant and reliable as the smallest—and that the health of our democracy depends ultimately

But the second problem is that the large tech

on the health of the thousands of weekly and daily

companies, like Facebook and Google, have siphoned

newspapers, digital outlets, ethnic media publications

off 75 to 80 percent of all the digital dollars in a typical

and public radio stations that inform the nation’s 330

market. That means that you have all of the legacy

million residents about what is happening in their own

media, as well as startup digital media, fighting with

backyards.” However, local news continues to be on the

the tech giants, and the tech giants rely on scale.

decline. What happened during the past couple decades that got us to where we are today?

[The third problem is] the social media phenomenon, in which everybody decided [there was no] need to

PENNY ABERNATHY (PA): There are three things that

have a newspaper when you could get it in your daily

got us to where we are today. The first is the collapse

newsfeed, which is built by an algorithm. Depending

of the for-profit business model that had sustained

on what you Googled in the past day or what Alexa

tens of thousands of newspapers. Most people are

heard you say at some point, you might get a newsfeed

surprised to learn that newspapers were often the

that has no credibility, comprehensiveness, or context.

prime, if not the sole, source of news and information in communities, and they relied on advertisers for 85 10

MS: You mention in your books the need to reimagine

the business model for local news. You have also written

market, it’s still working—and what will keep it working

about how good journalism alone is not sufficient to save

there. Second, we need to figure out a way to get the

local news organizations. I tend to think that traditionally,

nonprofit dollars into some of these markets on the

journalism and business have run counter to each other,

outskirts of the metro areas. Ninety percent of the

and that when business interests get involved, you might

nonprofit organizations that are supporting news are

end up with selective coverage of certain stories and

located in metro areas, and 90 percent of the dollars are

voices. But why is it important or necessary that this new

going there.

type of business model is developed for local news?

Third, we need public policy that addresses several PA: It’s not going to be one business model. One of the

things. One, we need public policy at the national, state,

things people don’t understand is that advertisers were

and local level that gives some kind of support from us

not buying the news. They were buying to reach an

as taxpayers. Second, even though the telecoms say

audience. One of the ways to attract advertisers was a)

90 percent of the country has access to high-speed

to be nonpartisan and b) to try to cover a whole range

Internet, the numbers are actually much lower once

of people in a community. As penetration has dropped,

you get out of the main metro area. What you get on

that has left the for-profit model, especially in poor

your phone and what you have access to in terms of

neighborhoods and communities, without a model.

critical and credible news and information depends on what you can access. In rural areas, the only things you

If we look to nonprofit, we have lost on average about

can often access is through your cell phone, and what’s

$60 billion in revenue each year.

the easiest thing to access on your cell phone? A social media app or your news feed.

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.

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

We need to look at for-profit models, we need to look at

education and news literacy down at the junior high

nonprofit models, and we need to look at public policy.

level, so that people understand how their vote in a local election can affect everything all the way up to

U.S. taxpayers pay only a fraction of what taxpayers

Washington and how they are missing things from

pay for public media in Japan, Australia, and just about

social media. There are a lot of good programs that

any European country, where there is more support for

educate people on spotting fake news, and it’s alarming

public media. If those other countries lose legacy or

how many people cannot spot fake news that runs on

for-profit newspapers, they still have a robust public

social media. We need to understand that social media

broadcasting system that goes down to the regional

can be a good instrument for informing the public, but

level. Ours is only at the national level. NPR, which goes

it also can be misused mightily for those who would like

down to the regional level, gets only a pittance of my

to traffic misinformation.

tax dollars. Most of it goes to PBS to pay for programs that are meritorious, like Masterpiece Theatre, but it’s

Let me give you an example during the recent pandemic.

entertainment. It’s not news and information.

[Newspapers like the New York Times, Washington Post, and state newspapers] relied on the state health

MS: What is it going to take to get the funding to be able

department and Johns Hopkins [for information], and

to revive local news?

there was often a lag of three to four weeks. In an adjacent county [to where I live], there was a very good

PA: We need to understand where the for-profit model

newspaper who quickly realized the best way to get the

is still working—I would say in about one-third of the

information about what was happening there was to go 11

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A Conversation on Local News

to the head of the hospital and say, how many people

many ways, the exact same problems as newspapers

have you admitted with COVID-19? What ages are they?

and television stations have, and they’re in much worse

How many have died of COVID-19?

shape because they started with much smaller profit margins. Ethnic media will also need to understand that

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 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

The loss of local newspapers—because they were often

make an AI algorithm that says I’m going to see how

the only thing covering small communities—means

much of the news that is on Facebook actually fits the

that they [national security and public health officials]

FCC critical information needs [based on the 2011 FCC

have trouble tracking epidemics. [In the past,] they

report, “The Information Needs of Communities.”] If you

relied on the local newspaper to talk about an uptick in

just base the algorithm on the headlines—because

measles. Forget a pandemic, just the normal cycle of a

it’s much more complicated to write an algorithm that

flu season is very hard to track now. That’s why we need

goes down and checks the veracity of a story—about

robust, credible news organizations on the ground and

60 percent of what was going on Facebook satisfied the

someone who’s trying to put that all in perspective

FCC critical information needs.

The Federal Communications Commission (FCC)

When we looked specifically in North Carolina, we

estimated [in 2011] that as much as 85 percent of

noticed that 57 of the 60 stories were crime stories.

the news that reached the New York Times or NBC

Second, we noticed that because it was based on an

originated on the ground with a weekly or small paper.

algorithm, things that were of public safety often didn’t

Because many of those reporters were also stringers for

make it until days after it was relevant. For instance,

larger papers or would file stories with the Associated

when a hurricane was bearing down on North Carolina,

Press, you had an early warning system that you don’t

it didn’t make Facebook until four days after the

have now.

hurricane was already out to sea. Third, there was a lot of good contextual reporting being done by television

MS: What is going to be the role of ethnic media?

stations, newspapers, and digital sites, but because they didn’t have an audience, and because social media

PA: The role of ethnic media is very critical here, in part

depends on scale and sharing, they never made it on

because mainstream media has not necessarily covered

social media.

the issues that affect ethnic media in the same way

12

that it affects the majority population in the U.S. What

It’s a loss for us individually as citizens not to have local

concerns me most is that ethnic media has suffered, in

news. ●

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Elissa Schaffner

Crisis Pregna and

Artist

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.

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ancy Centers d the Threat to Public health An Interview with Lisa Battisfore Caroline Clingan

“The idea was to take the battle to their turf,

counseling they provide is biased against

CPCs do provide limited medical services

take the protests to the [CPCs’] turf,” Battisfore

abortion

like ultrasounds, most CPCs are not licensed

says.

misleading.

and

is

usually

inaccurate

or

medical facilities, and most of their staff are not licensed clinicians.2 A large study of CPCs

WHAT ARE CRISIS PREGNANCY CENTERS? CPCs—also known as pregnancy resource centers, pregnancy care centers, or antiabortion centers—are organizations that

As of 2020, there are more than 2,500 CPCs in the U.S., outnumbering abortion facilities 3 to 1.1

present themselves as healthcare clinics but

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

whose primary aim is to dissuade patients

Despite the large and long-lived presence of

makes them appear like legitimate healthcare

from pursuing abortions. CPCs attract patients

CPCs, many do not know about their existence.

centers.2 This article highlights how CPCs

by offering free pregnancy tests, ultrasounds,

deceive their clients, threatening patient

and testing for sexually transmitted infections

CPCs are mission-based organizations, most

autonomy, equity, and safety. Regardless

(STIs), and by advertising themselves as

of which are funded by large anti-abortion

of readers’ personal views on abortion, this

destinations for all-options counseling and

nonprofits and are affiliated with Catholic

article aims to raise awareness of CPCs and

pregnancy care. However, in actuality, the

and evangelical Christian groups. While some

their negative impacts on reproductive justice.

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.

15

Crisis Pregnancy Centers

CPCS SPREAD DISINFORMATION

proven false associations.10,11 Battisfore says

abortion at six weeks, 2 states ban abortion

that CPCs sometimes provide references for

at 12 weeks, and 2 states ban abortion at

While CPCs are currently legal under the guise

these claims, but when they do, they cite out-

15 weeks.15 These are just a handful of the

of free speech, they spread disinformation

of-date information, poorly or unethically

gestational-age bans in place, which highlight

about the risks associated with abortion and,

designed studies, or articles that are not even

how delaying abortion care by just one or two

as a result, threaten reproductive justice. Two

relevant to the topic at hand. By spreading

weeks could leave a patient unable to access

common myths propagated by CPCs are that

medical disinformation, CPCs deny patients

abortion care in their state. Furthermore,

of Abortion Pill Reversal and Post Abortion

the opportunity to make fully informed

medication abortion can only be obtained

Syndrome.

decisions about their pregnancies. In doing

until 10 weeks gestational age, after which

so, they obstruct patient autonomy, one of

surgical abortion is the only option.16 CPCs

medicine’s core ethical principles.

know that any time spent at a CPC may limit

Abortion Pill Reversal refers to the idea that progesterone can be taken after mifepristone,

a patient’s options for and access to abortion

one of the pills used in medical abortions, to

CPCS CREATE BARRIERS TO QUALITY

reverse an abortion. This practice has been

HEALTHCARE

denounced by the American College of

care, and they take advantage of this.

CPCS THREATEN HEALTH EQUITY

Obstetricians and Gynecologists (ACOG) as

In addition to spreading disinformation,

it is not supported by the scientific literature

CPCs thwart access to quality prenatal care

CPCs threaten health equity by targeting

and may be associated with safety risks like

and abortion care. For example, STI testing is

vulnerable communities. This often includes

bleeding.4-6

recommended during pregnancy to prevent

people of color, young people, college

transmission of STIs to the fetus. However,

students, and people of lower socioeconomic

Secondly, Post Abortion Syndrome refers

only 20.9 percent of CPCs offer STI testing, and

status.17

to

psychological

among those that do, it is not comprehensive:

effects that follow an abortion.7 The notion

the

alleged

64 percent do not offer HIV testing, and 32

that women who undergo abortions have

percent do not offer STI treatment.12,13 This is

worse psychological outcomes than those

incomplete medical care that does not meet

who continue their pregnancies has been

national evidence-based standards for STI

disproven by academic researchers8 and

screening and treatment during pregnancy.14

refuted by professional medical associations

In this way, CPCs distract and delay patients

including

from obtaining comprehensive, evidence-

the

negative

American

Psychological

Association, American Psychiatric Association,

based prenatal care.

American Medical Association, ACOG, and the American Public Health Association.7 The

“People need healthcare, and they end up at

landmark study that disproved Post Abortion

this place, but they are getting incomplete,

Syndrome, called the Turnaway Study, actually

inaccurate pseudoscience,” Battisfore says.

showed that women who were denied

“For some, this was their one shot. They’re

abortions experienced poorer psychological

probably not going to get more [healthcare],

outcomes than women who were provided a

and they don’t even realize that what they did

desired abortion.

get was trash.”

9

“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 Other examples of false information spread

CPCs also prevent patients from attaining

and pamphlets frequently feature women of

by CPCs include linking abortion to an

abortion care by taking advantage of

color because that is their target audience.

increased risk of breast cancer, preterm birth,

the precious commodity of time during

A study of CPCs in Ohio demonstrated that

and future infertility, all of which have been

pregnancy. As of August 2023, 2 states ban

CPC clients were more likely to be women

16

Clingan

of Black, non-Hispanic race/ethnicity and of

Illinois introduced a bill in February 2023 that

low socioeconomic status.

Several years

aimed to criminalize CPCs on the basis of

ago, a network of CPCs launched an “urban

deceptive advertising. The bill was passed but

initiative” explicitly focused on Black women

then immediately blocked, and in December

and on opening CPCs in communities of

2023, it was permanently blocked. While

color.

18

These data demonstrate how CPCs

Battisfore hopes that states continue to enact

exploit disadvantaged groups, a concerning

policies that regulate CPCs, she asserts that

phenomenon given our nation’s long history

policies are insufficient.

3,17

of health inequities.

Policies only penalize CPCs after the fact, after harm has occurred.

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

She describes her goal as an activist as

and has been increasing in the U.S. since the

preventing harm from occurring in the first

1990s while decreasing globally.

place.

19,20

Racial

disparities in maternal mortality are especially striking in the U.S., with a 3-fold higher

“It really continues to be, and will always be,

maternal mortality rate among Black women

incumbent upon community activists and

compared to White women.

community leaders to make sure people

21

know the truth about CPCs,” Battisfore says.

In this context, CPCs are interacting with

“Having the law in place is ideal, obviously,

pregnant individuals at a highly vulnerable

because then when there are complaints,

time. By targeting people of color, all of

our government officials can take action.

the potential harms of CPCs—including

But having justice and bodily autonomy

disrespect for patient autonomy, decreased

dependent upon elected officials is inherently

trust in the healthcare system, delay of

problematic. There’s always going to be more

prenatal care, and delay of abortion care—

ways for them to skirt the different issues.”

may disproportionately burden people of color and worsen disparities in maternal

The argument in support of CPCs usually

mortality and other health metrics. Regulation

surrounds the material support they provide

of the CPC industry and further research on

for pregnant people. In addition to free

associated health impacts is needed to ensure

pregnancy tests and ultrasounds, most CPCs

that CPCs do not worsen health equity or

offer resources like free diapers, maternity

maternal mortality.

clothes, and parenting classes.2 In fact, recent research has shown that the majority of people

THE POLICY LANDSCAPE AROUND CPCS

who visit a CPC are not considering abortion.

Instead, the most common motivations for

A discussion of CPCs would not be complete

visiting a CPC are to receive free pregnancy

without a discussion of the surrounding policy

testing and infant supplies.22,23 In this way,

landscape. Following a handful of other states,

CPCs have the potential to benefit pregnant

17

Clingan

Crisis Pregnancy Centers

individuals, particularly those who want to

program to support CPCs, and 29 states

continue their pregnancies.

allocate state funds to support CPCs. However, despite substantial use of public funds by

With that being said, CPCs’ charitable

CPCs, policymakers have not conducted

programming is not completely benign.

comprehensive assessments of CPC services

Battisfore comments that, in most cases,

or their use of taxpayer dollars.3 There is an

clients must earn access to CPC resources.

urgent need for systematic evaluation of

Programs such as “Earn While You Learn” use

CPCs to assess their maternal and public

currency called “baby bucks” or “mommy

health consequences, particularly if public

money” that are earned by attending sessions

funding continues to be invested in these

ranging from parenting classes to Bible study

organizations.

or abstinence-only sex education.

24

A CALL TO ACTION Access to CPC resources is thus not without strings attached and is deeply intertwined

Drawing on her experience with RTN,

with their Christian mission. A more equitable

Battisfore offers some advice for physicians

approach would be to provide material

and patients on how to avoid the harms

resources alongside these classes, not in

of CPCs. Regardless of physicians’ personal

exchange for attendance. This would help

views on abortion or training in abortion

ensure that vulnerable clients are not being

procedures, they are trusted resources for their

coerced into participation because of their

patients and are ethically obligated to provide

economic circumstances.

referrals when patients are seeking this kind of care. Physicians should educate themselves

Of note, ten states utilize federal funds under

on CPCs in their region and educate their

the Temporary Assistance for Needy Families

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.

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

2. Bryant AG, Swartz JJ. Why Crisis Pregnancy Centers Are Legal but Unethical. AMA J Ethics. 2018;20(1):269-277.

7. Kelly K. The spread of ‘Post Abortion Syndrome’ as social diagnosis.

Soc Sci Med. 2014;102:18-25.

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

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.

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

18

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

This is the closest Planned Parenthood clinic to

providing referrals to abortion care or family

Northwestern’s medical campus.

planning centers, physicians should be certain of the centers’ credibility and licensure.

CPCs pose a serious and growing threat to public health. It is likely that CPCs will increase

For patients seeking reproductive healthcare,

in prevalence as abortion restrictions increase

Battisfore recommends starting with the

in post-Roe America.

Planned Parenthood website. For patients seeking an abortion, she recommends using

We encourage readers to investigate CPCs

a verified resource to find an abortion clinic,

further on their own, as the literature on

like ineedana.com or abortionfinder.org. If

CPCs is vast. For readers who live in Chicago,

a patient uses their search engine to find

RTN is accepting volunteer applications and

an abortion clinic, Battisfore advises that

also offers informational sessions to raise

they do not click the sponsored results or

awareness about CPCs in small-group settings.

advertisements that show up at the top of the

We encourage readers to support state laws

results list, as most of these will be CPCs.

that regulate CPCs, so that patients can be better protected from medical disinformation and can engage in informed decision-making

Just this year, a CPC opened next to the Planned Parenthood clinic in the Old Town neighborhood of Chicago.

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. ●

2021;48(10):738-747.

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.

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

19

Health Communication St Brandon Boyle, Lili Bui

Since June 2023, the approval of RSV vaccines has led to

WHAT IS RSV?

significant public health milestones. However, general anti-vaccination sentiments and unclear information

RSV is a highly contagious virus that causes 70 to 80

surrounding the vaccines has led to hesitancy and

percent of lower respiratory infections, most commonly

confusion regarding who should receive which vaccine

bronchiolitis and pneumonia among children.1 RSV

and when they should.

season typically runs from September to January. While RSV infections are most common in young children,

The RSV vaccine rollout is yet another reminder of the

the consequences can be equally as severe in older

importance of health communication. Here, we showcase

adults, especially those ≥60 years old, those who are

an example of a patient handout on the RSV vaccine, using

immunocompromised, and those with underlying health

best practices of health communication. It is not perfect

conditions such as cardiopulmonary disease.2

but attempts to highlight the following strategies: Vaccines can now help lower the risk of respiratory •

Make it ACCESSIBLE by simplifying the language,

infection, hospitalization, and other consequences.

keeping it concise, and breaking up the text with headings and formatting •

WHAT ARE THE TYPES OF RSV VACCINES?

Make it MEANINGFUL by tailoring it to your audience and writing about what is important to and

There are currently three primary RSV vaccines:

what directly affects your audience • •

Make it ACTIONABLE by writing about specific

•

Nirsevimab (Beyfortus™)

things your audience can do

•

RSVpreF (Abrysvo™)

Make it VISUAL by including images and graphics

•

RSVpreF3 (ArexvyTM)

(not demonstrated here) WHO SHOULD RECEIVE THE RSV VACCINE, WHICH The following are additional guides:

ONE, AND WHEN?

•

Simply Put: a Guide for Creating Easy-to-Understand

The Advisory Committee on Immunization Practices

Materials (https://stacks.cdc.gov/view/cdc/11938)

(ACIP) recommends the RSV vaccine for infants,3 pregnant

Health Literacy: A Manual for Clinicians (http://lib.

individuals,4 and adults ≥60 years old.2

•

ncfh.org/pdfs/6617.pdf ) •

Federal Plain Language Guidelines (https://www.

Infants

plainlanguage.gov/media/FederalPLGuidelines.pdf ) •

Centers for Medicare and Medicaid Services: Writing

The ACIP recommends the Nirsevimab vaccine within

for the Web (https://www.cms.gov/files/document/

the first week of life for infants <8 months entering their

writing-web.pdf ) ●

first RSV season and for at-risk infants and children 8 to19 months entering their second RSV season.3 Clinical

20

trategies 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

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

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.

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.

Common side effects include pain, redness, swelling, fatigue, fever, headache, nausea, diarrhea, and muscle or joint pain.11

21

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

and unintentional injury.

policy advocacy and medical discussions, particularly about injury prevention among children and adolescents.

MS: A lot of it is related to framing, messaging, and

What is the most common and what is the most harmful

using the right words. I think this can be hard sometimes

piece of misinformation you tend to encounter?

because we have different interpretations of things that can be related to individual, cultural, and sociopolitical

DR. KAREN SHEEHAN (KS): For injury prevention,

understandings, which can also change over time. How

it’s probably around firearm safety: not having all the

should we approach finding the right way to frame

facts, not thinking of it as a public health issue, [not

messages, as well as reframe messages that have been

understanding] that there are strategies we could use

misinterpreted in the past?

to help prevent injuries from occurring. Often people will say, “Well, guns don’t kill people. People kill people.”

KS: It involves engaging the people who are most

But guns make it so lethal and make it so easy.

impacted and having them become the trusted messenger. That can help get through some of those

There are strategies that we can use to help keep

cultural and language barriers.

people safe, such as if you need to have a gun, storing

22

the bullets and the gun separately and [keeping the

When COVID-19 first hit, it disproportionately impacted

gun] locked. There are things that we can do to help

communities that have been historically disinvested

prevent firearm injuries from occurring, [especially

in. Our community partners, with whom we’ve had

since] a gun in the home increases the risk of suicide

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

Complicated public health messaging can be hard to distill into a couple little sound bites.

Spanish-speaking physicians to answer any questions

Say, for example, I have a mom who wants to co-sleep

that

members]

with her kids. The American Academy of Pediatrics

might have about vaccines. It’s about making those

would say no, you should never do that. In my clinical

connections to see where you can find a shared platform

practice, we do shared decision-making. If this is

to build trust upon because it really does come down to

something that a patient strongly believes in, we can

trust.

discuss all the risks and why we don’t recommend it, but

[Spanish-speaking

community

I can also give them strategies to help keep their kids One of our biggest challenges right now is all these fake

safe. For example, instead of putting a baby on the bed

news sites. How can you tell what’s true and not true?

against the wall so they don’t roll out, it’s actually better

That’s really tough. We can let people know what is real

to put them on the outside of the bed because if they

or not real, but it can be tricky to know what the truth is.

roll out, they won’t hurt themselves—I know that from being an ER physician for 25 years—but they could get

MS: Building trust with communities is something we

smothered if they got trapped by rolling into the wall.

talk a lot about in medical school as well. In addition

How can you explain that in a five-second public health

to understanding a community and finding shared

message? I can’t go into that level of detail.

messaging, what are some of the ways we connect with communities and build trust with communities?

That’s where the tension is. Those complex messages are hard. Or people manipulate what you say and just

KS:

Just show up. Go out to the communities. Go spend some time there.

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

That really makes the difference. It always seems like

professionals, we should try to get more pro-public

we’re so busy as healthcare professionals and we don’t

health messaging out there because otherwise the

have the time to do this. But it is the most rewarding

conversation becomes dominated by other people that

thing you could ever do. That’s the best way to build

might not have everyone’s interest at heart.

trust, to spend time with [community members and community organizations], get to know them as people,

MS: It’s becoming more and more important to

and better understand what pressures they are facing.

understand who is credible. For example, we traditionally think of public health officials, healthcare providers, and

Small nonprofits are always scrambling for funding.

medical associations as authorities on public health and

Even the big organizations are. Public health is not well

medical topics, but some of those distinctions are starting

funded in this country. [It’s important] to understand

to blur. How do we navigate that space of determining

what other responsibilities they have. They might be

credibility and authority?

interested in your project, but they’re grant-funded to do other work. If they’re not being funded to do it, it

KS: It’s hard to blanketly tell people [what or who to

could be a challenge. Sometimes you understand that

trust]. It’s tough. It’s going to be important for healthcare

better when you’re out there with them.

professionals and public health professionals to hone our communication skills and think about it more

MS: Are there ways to leverage social media to tackle

than we currently are. It’s such a huge issue right now,

misinformation and reach out to communities?

and it’s just going to get more polarizing if we don’t pay attention to it. I don’t have any magic solutions

KS: I do, but I think it could be tricky.

unfortunately, only more questions. ● 23

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

Consequently, the spread of these untruthful

individuals who lead community-focused

ideas can harm communities, particularly

initiatives

of

minoritized groups like LGBTQ+ people who

marginalized queer folx. These individuals

already experience stigma and discrimination.

that

support

the

health

are paving the way in establishing equitable healthcare for this population. Together, we

This was the case during the Mpox (or

discuss LGBTQ+ health inequities and how

formerly called monkeypox) outbreak of 2022.

misinformation perpetuates them.

Premature assumptions about uncertain information led to inaccurate public health

There are many reasons why we spread and

communication. In the episode, “40+ Years

believe misinformation, including emotional,

Following the First Report of HIV/AIDS in June

cognitive, and behavioral factors related to

1981: Where Are We Now?”, I discuss with

human interactions. For example, the “illusory

Dr. Steven Thrasher, the inaugural Daniel H.

truth” effect suggests that we are more likely

Renberg Chair of Social Justice in Reporting

to believe information that is repeated.1

at Northwestern University, how the initial messaging around Mpox did not provide

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.

24

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

that medical associations recommend surgery

sexual contact as a driver of Mpox transmission

for all transgender youth. But the journey to

to avoid stigmatizing the gay and bisexual

obtaining gender affirming care for minors

community, among whom the initial cases

could not be stricter and more conservative

of

for young individuals.

Mpox

occurred.

However,

avoiding

classification of the virus as an STI misinforms people who are at higher risk of contracting

“The decision is made with the minor, the

the virus through sex.

parent, their mental health professional and a medical doctor,” Chanel stated. “There [are]

“Sometimes not talking about something

always rules in place.”

is its own form of stigma: homophobia,” Dr. Thrasher said.

The criteria for establishing a gender incongruence diagnosis is well-established

Public health information should have placed

in the Diagnostic and Statistical Manual of

more focus on cautioning individuals about

Mental Disorders (DSM-5).5 In addition, the

exposure during sexual activity. By making

World Professional Association of Transgender

repetitive statements that the disease could

Health-8 provides seven different criteria

not be sexually transmitted, the illusory effect

that adolescents must meet in order to be

allowed people to believe these statements

considered for surgery, including, but not

were true.

limited to, experiencing gender diversity or incongruence over time, addressing mental

Likewise, when elected officials repeatedly

health concerns, and being informed of the

share misinformation to further discriminatory

reproductive effects.6

political agendas,

they often misguide

communities. Episode 2

of The E(Queer)

In fact, growing evidence suggests that

ity Podcast, titled “Gender Affirming Care

adolescents may benefit from receiving

Demands Equity”, features guest Chanel

hormone and/or surgical treatments on an

Haley who is the Director of Education

individual-need basis rather than on an age-

and Community Engagement for Georgia

cutoff basis.7 For example, the decision to

Equality. Her work has focused on bridging

undergo top surgery can vary from adolescent

gaps in gender-affirming care for minors. We

to adolescent, depending on their goals,

discussed how legislators often make false

maturity, and understanding of the process

claims, such that parents should be blamed

and what they want to pursue. Despite

for children questioning their gender and/or

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

25

Brown

Combating Misinformation in LGBTQ+ Health

legislators comparing gender transition in

at birth because screeners used the voices of

youth to child abuse, medical and/or surgical

respondents for identification purposes. As

treatment for gender dysphoria is a long and

a result, screeners conflated sex and gender,

Still, without changing hearts and minds,

thoughtful process—one that ultimately aims

followed the wrong question protocol for

structural changes to our healthcare system

to improve the physical and mental health of

these individuals, and input systematically

fall short. Tackling misinformation starts from

patients and families.

biased results. Including a gender diverse CAB

looking inside ourselves and confronting

in the decision making process for this study

what we do not know with curiosity and

would likely have prevented this bias.

compassion, rather than with fear and

8,9

To avoid spreading misinformation, we first

landscape for LGBTQ+ patients looks brighter.

10

need more representation. We need well-

assumption.12 We should challenge the biases

informed research practices that include

More structural changes are already underway

that we have towards our family and friends

the voices of queer people by increasing the

or will be coming soon to benefit the queer

within the queer community.

number of community advisory boards (CABs)

patient population. For example, asking

that participate in public health research. CABs

patients to self-identify their gender and

Queer people live in a myriad of situations:

consist of members who share a unique sense

provide a range of options to do so is now

families of same-sex partners with children;

of belonging to the project being investigated

supported, as seen within the recent “X”

bisexual individuals who take PrEP; minors

and can lend an influential voice in decision-

legal change

11

at Northwestern Medicine.

experiencing

gender

making.

By allowing this designation, which follows

unsupportive

environments.

incongruence Any

in

queer

the larger approval of an “X” designation to

person in these situations requires displays of

A great example of this is the Gender Pathways

licenses in Illinois, this change can be affirming

support from loved ones as well as the wider

Program at Northwestern Medicine, which

for non-binary or agender people who receive

healthcare sector. Allyship in its truest form

has a running CAB that is representative

medical care.

emphasizes affirmation, not tolerance.

of transgender and gender diverse people who meet often to review ongoing research.

To further decrease misinformation, we should

Without greater representation, more patients

provide meaningful training for healthcare

will fall through the cracks. In an analysis of the

providers to feel comfortable navigating

2014-2016 Behavioral Risk Factor Surveillance

LGBTQ+ care, starting early in their preclinical

System (BRFSS) dataset, an ongoing telephone

and clinical years. We should also empower

interview survey conducted by the Centers for

members of the queer community to become

Disease Control and state health departments,

health practitioners, health care researchers,

30 percent of transgender men and women,

and/or policy advocates themselves. In

respectively, had a misclassified sex assigned

pursuing these endeavors, the healthcare

1. van der Linden S. Misinformation: susceptibility, spread, and interventions to immunize the public. Nat Med. 2022;28(3):460-467.

Association. Published August 2022. Accessed December 21, 2023. https://www.psychiatry.org/patients-families/gender-dysphoria/ what-is-gender-dysphoria

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

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.

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.

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/

5. Turban J. What is Gender Dysphoria? American Psychiatric

9. Attorney General Bailey Files Suit Over St. Louis Pediatric

26

Only through unwavering support of the lived experiences of LGBTQ+ people can the journey towards combating misinformation begin. ●

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

FIREARM SAFETY

The first time most people learn about

In 2011, Florida passed the Firearm Owners

vaccinations or flu shots is at the doctor’s

Protection Act (FOPA), prohibiting doctors

office. We look to healthcare providers for

from discussing firearms or guns with their

guidance on everyday medical concerns and

patients. Those who did could face a fine of

complex care decisions. As a result, healthcare

up to $10,000 and risk losing their medical

providers are one of the primary sources of

license.1 Proponents believed this law would

health awareness in the U.S.

protect Second Amendment rights. In a letter to its members, the National Rifle Association

However, on some politically charged topics,

stated, “It is a political agenda to ban guns.

the government has taken it into their own

Parents do not take their children to physicians

hands to determine what can or cannot be

for a political lecture against the ownership of

discussed in the doctor’s office. For example,

firearms. They go there for medical care.”1

Florida has banned physicians from bringing up gun ownership and Texas has limited

Legal challenges from both sides continued

discussions on abortions. In some cases, these

debating the constitutionality for many years.

are done to protect patient health safety,

A federal appeals court ultimately overturned

such as in the case of bans on the practice of

several provisions of FOPA in 2017, citing

conversion therapy.

concerns about freedom of speech. As one of the judges who voted to strike down the

However, in other cases, bans limit the information available to patients and obstruct the patient’s ability to make informed decisions.

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

In such cases, the absence of information

public health and public safety. The FOPA

places patient health and safety at stake.

infringed on a physician’s responsibility to 27

In the Absence of Information

provide information important for patient

The court agreed that in the fields of medicine

Colorado is really nice this time of year,” or

health. Dr. Andrew W. Gurman, president of

and public health, information saves lives.”2

“You can’t do anything in Texas and I can’t tell

the American Medical Association at the time,

you anything further in Texas, but you need

2

stated that “counseling patients we care for

In the case of firearm safety, communication

to get out of state.”7 This vagueness forces

makes a difference in preventing gun-related

and information can save lives and could have

patients to pick up on clues and then figure

injuries and deaths.”3

prevented some of the gun-related deaths of

out transportation and funding to travel out of

those 279 children. It is important for this kind

state, which not only delays essential care for

Many gun-related deaths in the U.S. could be

of discourse to happen in the doctor’s office,

patients, but also places the burden of finding

prevented if there was greater awareness of

and bans on such discussions will only cause

help on the patient.

safe firearm storage practices, such as storing

more harm.

a gun locked and unloaded and storing ammunition separately.4 One study analyzing

Lauren Miller, a mother who ultimately had to go out-of-state to get an abortion for medical

THE A-WORD

gun-related deaths from 2009 to 2018 found

reasons, believes that Texas and its restrictions

279 cases in which a child less than 15 years old

However, firearm safety is not the only topic

prevented her doctors from doing more to

died unintentionally due to a firearm injury. Of

that has been banned from primary care

help her. After reflecting on her experience in

those, more than two-thirds happened in the

appointments. Abortion laws can also be

an interview with NPR, she said, “They would

victim’s home with a gun that belonged to a

restrictive to the point where some physicians

have just been able to give information freely,

relative, and almost half involved a child 2 to

no longer feel comfortable discussing the

get it scheduled. It wouldn’t become this

4 years old.

option of abortion with their patients.

whole agonizing process of just trying to get

5

information of—what do we actually need?

Yearly check-ups can be a good place to bring

In 2021, Texas passed a heartbeat bill,

up these kinds of discussions.

prohibiting physicians from performing an

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.

abortion on a baby once a fetal heartbeat

In an interview with NPR, Dr. Eve Espey, chair

is detected, which occurs around 6 weeks.6

of the obstetrics and gynecology department

A section of this law prohibits healthcare

at the University of New Mexico, recalls how it

providers from “aiding and abetting” an

took six weeks for one of her patients, whose

abortion at the risk of losing their medical

fetus had a fatal condition, to save enough

license. Some physicians have interpreted this

money and figure out how to travel to another

to mean that they cannot mention the word

state for an abortion. Because of this delay, the

abortion to their patients.7 One doctor said,

patient ended up hemorrhaging and needed

“If a patient’s grandmother and or partner or

a hysterectomy to survive.7

sister finds out that I’ve talked to them about an abortion…all they have to do is find a

Dr. Eric Fleegler, a professor of pediatrics and

lawyer and all of a sudden I’m ‘aiding and

emergency medicine at Harvard Medical

abetting’ someone into an abortion.”

7

School, said that when he asks parents about gun safety in homes, most respond with, “I

Many physicians are scared that simply

hadn’t thought of that.”5

providing information will be considered helping a patient get an abortion and will be

In a press release published soon after the

punishable by the heartbeat bill. Some have

federal court struck down the law, the AMA

turned to using cryptic messages to tell their

stated, “Longstanding AMA policy supports

patients to seek care in another state. This

physician

about

Restrictions that prevent physicians from providing important healthcare information prevents physicians from doing what they were trained to do.

firearm

includes statements like, “The weather’s really

More importantly, withholding information

safety and risks to help patients safeguard

nice in New Mexico right now–you should

can exacerbate already high barriers to

themselves and their families from accidents.

go check it out,” or “I’ve heard traveling to

accurate health information and proper care.

28

consultations

Where do we go?”7

Huang

transgender individuals who have been

BANS ON CONVERSION THERAPY

rights for patients and physicians.

exposed to conversion therapy before the age However, bans on harmful practices can also

of 10 were four times more likely to report a

be protective. Many states, like California,

suicide attempt in their lifetime compared

Oregon, and Illinois, have banned conversion

to transgender individuals who were never

therapy, or the practice of attempting to alter a

forced to undergo conversion therapy.13 AMA

person’s sexual and gender identity8 that often

board member Dr. William E. Kobler said in

uses violence or humiliation.9 However, there

a statement backing a nationwide ban, “It

is no strong evidence that suggests conversion

is clear to the AMA that conversion therapy

therapy can alter sexual orientation or gender

needs to end in the United States given the

identity.

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.

In 2018, the state of Washington

risk of deliberate harm to LGBTQ people…

banned the practice of conversion therapy for

Conversion therapy has no foundation as

people under 18.

scientifically valid medical care and lacks

This then infringes on patient autonomy, one

credible evidence to support its efficacy or

of the pillars of medical ethics, and perverts

safety.”

the informed-decision making process.

10

11

Opponents of this law believed that people

13

should have the right to hear their options. In support of hearing a case against Washington’s

By

states

Whether it is restricting the discussion

conversion therapy ban, Supreme Court

have blocked rhetoric that encourages its

banning

conversion

therapy,

of gun safety, withholding information

Justice Clarence Thomas wrote, “licensed

discussion and practice, both of which can

about abortions, or banning the practice of

counselors can speak with minors about

inflict harm on patients. In cases like these,

conversion therapy, the laws and regulations

gender dysphoria, but only if they convey

bans can prevent the spread of information

politicians make regarding how physicians

the state-approved message of encouraging

about harmful practices, especially those that

communicate with patients can have a

minors to explore their gender identities.

target marginalized populations and those

powerful effect on the provision of healthcare,

Expressing any other message is forbidden –

that are not backed by any scientific literature

the

even if the counselor’s clients ask for help to

or medical guidelines.

and safety, and the availability of health

accept their biological sex.”12 conversion

therapy

of

patient

autonomy

information. It is thus important to examine CONCLUSION

However,

preservation

can

be

the impact of both the presence of inaccurate information and the absence of accurate

incredibly harmful. A study found that

It is important to protect first amendment

information. ●

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

www.cbsnews.com/miami/news/most-accidental-shooting-deathschildren-involve-guns-loaded-unlocked/

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/

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

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

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

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/

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://

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

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 - cour t- 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

29

30

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.

31

A Conversation on Slowing Down

NATHAN WALTER (NW): These biases have been

not lack of education in the narrow sense, and it’s not

part of what helped us survive as human beings

the way that we present information about vaccines.

for much longer than we had medicine, risk factors,

We’re the problem. We are creatures that are very

numbers, or statistics. We can be very logical and very

good at processing certain things and not so good at

rational, but we sometimes just can’t help it because

processing other things.

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

The solution is to stop.

It’s to slow down and recognize our own biases.

that are easy to process, and what tends to be easy to

When we wake up in the morning and we see in our

process can also lead to biased conclusions.

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

MS: In some ways, I find that thinking about this is a bit

we should probably not book that flight to Nigeria—

pessimistic because it suggests that the way things are

we should do the same thing when we decide what to

right now are because we are the way we are, because

share on social media and what to tell our friends.

humans are the way we are. But I also know that there are ways to overcome these biases, retrain the way we

I often ask my students, how long does it take you to

think, and exploit these biases. What do you think are

decide whether to share or not to share something, let’s

the solutions for addressing these biases and addressing

say, on Instagram or Facebook? Twenty seconds. That’s

misinformation?

not enough time to read carefully or even read not very carefully. That tells me that there are certain cues that

NW: On the one hand, I agree with you that it’s

we look for to make these intuitive decisions. What are

pessimistic in the sense that it doesn’t offer an easy

these cues? If something agrees with us, or if something

solution like, let’s say, a technology, an algorithm, or

looks like something that we would post. Most links

one policy that would change and all of a sudden

that are retweeted on X have never been opened. What

misinformation would be a problem in our history

does it tell us? That people are just sharing without

books. On the other hand, I find it a little bit optimistic

really slowing down and carefully asking themselves

because it also tells us that misinformation has always

these questions.

been around going back to the hunter-gatherers, and we were able to survive and thrive. Although

We don’t need to be medical experts. We don’t need

we commonly hear things like misinformation is

to ask ourselves, is RNA really the best approach here?

everywhere and this is as misinformed as we’ve ever

Because we don’t know. I don’t know. What we do need

been—that’s probably not true.

to ask ourselves is, why am I so eager to believe this or why is it so difficult for me to believe this?

The first thing that we need to recognize is we need to

32

accurately diagnose the problem. The problem is not

MS: Are we able to slow down and think through these

TikTok, it’s not social media, it’s not Donald Trump, it’s

questions, especially since a lot of the reasons why

Shi

biases work is because we fall into automated processes

disinformation, there are no repercussions. When

of thinking, especially during moments that require

the economy encourages engagement, there are

quick action?

no repercussions for spreading disinformation. And wouldn’t it be wonderful if you could just “make up

NW: Theoretically, the answer is yes because there’s

stuff” because then it’s new, you can get people angry,

a lot of research, not only in the U.S. but also in many

it’s a better story, and you’re not committed to anything

different countries, showing that by [providing] nudges

in reality. So something has to change in that nexus of

toward accuracy, people are able to slow down and

education, technology, and policy.

make better decisions. For instance, in research in which people have to decide what to share on social media,

MS: What are the ways that we can use stories and

the simple nudge of “how credible is this information?”

anecdotes to reframe the ways we think about information

basically transforms what people decide to share and

and share information?

not to share. This finding has at least two implications.

First, the implication is it’s not natural for us to think

NW: There’s an objective way to statistically prove

about accuracy if we need to be prompted to do that.

that by sheer chance, “x” number of kids will show the

That’s troubling. The second is if there’s a way for social

first signs of autism 48 hours after they get the MMR

media platforms to nudge us in some organic way

[Measles, Mumps, Rubella] vaccine. Ostensibly, that

without moderating the content that much, that could

[statistic] could be the end to misinformation about

be very helpful.

vaccines. But it’s not, and it’s not because this is not how humans think.

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?

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

NW: No, I’m not that naive. I think that there needs

thing that I’m thinking about is that there’s a chance

to be a combination of policy change, some kind

that it could happen. [But] we don’t hold anecdotes to

of collaboration with media platforms and media

that standard. We recognize that it’s just one person

technology, and a rethinking of education around

and one experience, but it’s also so vivid and so

misinformation.

emotional. Stories are very, very powerful. We shouldn’t be afraid to use anecdotes as health experts. Although

Right now, we live in a society in which the click

it’s wonderful to show the numbers and cite the latest

economy is based on views, shares, and engagement.

research that was published on the topic, our patients

If you are a non-institutional actor knowingly sharing

are not likely to remember that. ●

33

Health Conspiracies and the Struggle to Mak Meilynn Shi

My dad turns off the Wi-Fi at 10:30 every night.

He bought an automatic timer last month

and garlic.1 Such phenomena are not specific

so he can’t forget. He wants to minimize the

to COVID-19 either.2

amount of time our bodies are exposed to the electromagnetic fields generated by Wi-Fi

Health conspiracies often sound similar to the

signals. It has nothing to do with education (he

messaging associated with alternative health

has a graduate degree…in computer science)

movements and wellness culture, terms that

or irrational thought (studies have looked at

broadly encompass everything from yoga

the effect of phones on sperm count). It’s how

to acupuncture to reiki. Wellness culture

he copes with something unfamiliar.

arose from 1960s counterculture that sought to experiment with holistic practices and

During the past few years, more and more

increase access to healthcare.3

health conspiracies and conspiracy-like ideas have found their way into the spotlight.

But today, wellness culture is primarily

COVID-19 generated a new thread of

dominated by chatty influencers promoting

conspiracies, partly in response to emerging

trends on unregulated platforms whose

mRNA technology. There were theories about

engagement-driven

vaccines injecting 5G microchips that Big Tech

generate virtual hive minds. This creates

and Big Brother were using for surveillance.

fodder for conspiracy theories, sometimes

There was Donald Trump suggesting we inject

in alignment with far-right politics.3 Not

bleach to kill the virus. There were people

only does this debase alternative medicine

declaring that COVID-19 wasn’t real and

practices that can actually help people, but

neither were the death rates. There were also

this also creates demand for people like Dr.

the usual conspiracies igniting anti-vaxx and

Oz and Alex Jones who consistently make

anti-pharma and anti-establishment furor.

unsubstantiated and misleading claims.4 And

algorithms

tend

to

nothing feeds the misinformation beast more Studies found that increased exposure to

than an audience and a market.

conspiracy theories led to increased reluctance

34

to engage in COVID-19 prevention measures,

But it’s not helpful to deride conspiracy

such as social distancing and vaccination,

believers as outright delusional. That’s not

along with increased willingness to engage

entirely fair. Conspiracy theories have a long

in alternative treatments, such as chloroquine

history rooted in distrust of political elites

ke Sense of the Unfamiliar and central authority. They are attempts to

and what is not.

daily life, it’s foremost about understanding

understand sociopolitical events, especially

why someone chooses to think the way they

during times of upheaval, by claiming that

do. Most of us don’t respond to scientific

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

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

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

processes that often draw upon automatic

being distrustful of any information—I’m

cognitive systems; they are social in that they

already wondering if the Reddit video of a

seek to uphold collective identity and protect

Preserving truth and building trust is not about

Russian man brushing a bear’s teeth is just

the ingroup from the outgroup; and they are

censuring all falsehoods and all believers.

a figment of the AI imagination. When that

consequential in that they influence the way

Not only is the line between free speech and

happens, I might also find myself turning

individuals and groups decide to act.6

dangerous speech too amorphous–that’s why

off the Wi-Fi at 10:30 every night, in part to

we can’t just ask Google and Mark Zuckerberg

get off the grid, maybe also in part to avoid

Many false beliefs, even those that do not

to censor all sources of misinformation–but

unnecessary electromagnetic radiation. Deep

qualify as conspiracy theories, share similar

it’s also not about us versus them. We are all

down, we all have a voice like this, a voice that

principles and similar consequences. In some

prone to believing in conspiracy theories and

is anxious about the unfamiliar and unsure of

ways, those that contain the vaguest hint of

conspiracy-like ideas.

the science. And that’s okay. We should talk

plausibility are the most insidious because

about it with each other because we’re all just

they exist in a grey area between what is true

Rather, whether it’s in medicine, politics, or

trying to make sense of the same things. ●

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.

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.

5. Douglas KM, Uscinski JE, Sutton RM, et al. Understanding Conspiracy Theories. Polit Psychol. 2019;40(S1):3-35.

2. Oliver JE, Wood T. Medical Conspiracy Theories and Health Behaviors in the United States. JAMA Intern Med. 2014;174(5):817-818.

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.

3. Baker SA. Alt. Health Influencers: how wellness culture and web

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.

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About NPHR The Northwestern Public Health Review is a student-

PARTNERSHIP WITH BVIS

run organization founded in 2013 to share and stimulate

Founded in 1921 by Thomas Smith Jones,

multi-disciplinary conversations about current public

the Biomedical Visualization (BVIS) graduate

health issues. Through our print issues, blog, and campus

program at the University of Illinois at Chicago

events, we hope to help the Northwestern and broader

is one of only four accredited graduate programs

Chicago community achieve greater health equity.

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.

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Meilynn Shi Editor-in-Chief Grace Bellinger, PhD, MPH Adviser Caroline Clingan Community Engagement Editor Lili Bui Opinions Editor Sophia Huang Features Editor Isabelle Kang Blog Editor Jerome Wang Design Editor Helen Zhu Design Editor

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Northwestern Public Health Review Winter 2025 Issue