








































This is an open access article under the terms of a license that permits non-commercial use, provided the original work is properly cited.  
© 2023 The Authors. Société Internationale d'Urologie Journal, published by the Société Internationale d'Urologie, Canada.

Key Words Competing Interests Article Information

Social media, misinformation, harm, pelvic 
organ prolapse

None declared. Received on, October 4, 2022 
Accepted on, November 26, 2022 
This article has been peer reviewed.

Soc Int Urol J. 2023;4(2):131–135

DOI: 10.48083/PGWG4918

Harm Related to Social Media Misinformation  
on Pelvic Organ Prolapse in YouTube, Instagram,  
and Pinterest Posts

Chaoyang Wang,1 Juhye Kang,1 Emily Gerard,1 Stacy Loeb,2 Rena D. Malik1

1 Department of Urology at the University of Maryland School of Medicine, Baltimore, United States  
2 Department of Urology at NYU Langone Health, New York City, United States

Abstract

Social media can improve patient education but may pose risks due to misinformation. There is no consensus on 
categorizing types of misinformation and harm. This study aimed to categorize and quantify misinformation and 
resultant harm from posts on YouTube, Pinterest, and Instagram on pelvic organ prolapse (POP), a prevalent benign 
condition that impacts quality of life. We conducted a descriptive study of 300 posts presented in these platforms in 
2019. Using Fisher exact test, we show a significant difference in the distribution of misinformation between social media 
platforms. Harmful posts were most frequently present on Pinterest, leading to harmful inaction and economic harm.

Introduction

In the United States, 8 in 10 internet users search for healthcare information online, a majority using social media[1]. 
A recent study examining misinformation in online cancer resources concluded that 32.5% of these articles contained 
misinformation and the majority were deemed harmful[2]. While misinformation about malignancies can pose 
significant health risks, it remains unclear whether misinformation about prevalent benign conditions such as pelvic 
organ prolapse (POP) leads to harm.

With growing numbers of social media platforms, instruments to categorize diverse social media posts regarding 
the type of misinformation and potential harm may be challenging to implement due to the vastly different content 
format and length presented in these platforms. Therefore, a streamlined classification of the type and nature of 
health-related misinformation compatible across multiple networks is needed.

POP is a benign condition that impacts quality of life with a prevalence as high as 50% of women, with 12% electing 
for surgical correction[3]. We previously identified the presence of “low to moderate quality” information in 74.1% of 
posts on pelvic organ prolapse on Pinterest, YouTube, and Instagram[4].

We investigated 3 prominent social media platforms (YouTube, Pinterest, and Instagram) for POP posts to catego-
rize the quantity and types of misinformation represented, as well as the degree and type of potential harm resulting 
from exposure to misinformation about this benign condition.

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Materials and Methods
We conducted a descriptive study in October 2021 that 
was exempt by the University of Maryland Internal 
Review Board (IRB). Relevant YouTube videos and 
Pinterest and Instagram posts were identified by 
searching for “pelvic organ prolapse” on YouTube and 
Pinterest and “#PelvicOrganProlapse” on Instagram 
in September 2019. These platforms were chosen 
because they are among the top 15 most used social 
media platforms and have a proprietary search engine 
to identify relevant and publicly available pelvic organ 
prolapse posts. The first 100 posts on each platform were 
analyzed for quality, understandability, actionability, 
and misinformation as detailed by our previous study[4]. 
Misinformation was assessed using a Likert scale from 1 
(no misinformation) to 5 (high misinformation).

We reviewed posts with misinformation scores 
≥ 2 for type and amount of misinformation, and the 
type of resultant harm[2].  To measure harmfulness, 
reviewers used a Likert scale from 1 (certainly not 
harmful) to 5 (certainly harmful). Harm was defined 
as harmful inaction (encouragement to forgo stan-
dard of care), economic harm (money spent on inef-
fective treatments), harmful action (toxic effects of 
the suggested test or treatment), and harmful inter-
action (medical interactions with curative therapies). 
Type of misinformation was defined based on prior 
work: fabricated content (a completely false statement), 
misleading content (misleading use of content to frame 
an issue), imposter content (genuine sources imperson-
ated with false sources), manipulative content (genu-
ine information or imagery manipulated to deceive), 
false connection (headlines, visuals, or captions that 
do not support the content), and false context (genuine 
content shared with false contextual information)[5].  
Each social media post was reviewed by at least 2 review-
ers. Disagreements were reviewed until consensus  
was achieved.

Descriptive statistics were calculated as the number 
of observations and percentages. Data were analyzed 
using Fisher exact test and examined for associations 
between the categorical variables of interest: social 
media platform, quantity of misinformation, and 
harmfulness of medical claims. P-values < 0.05 were 
significant.

Results
Of 300 total posts including 100 posts per platform,  
82 posts were identified as misinformative comprising 
18 YouTube videos, 24 Pinterest posts, and 40 Instagram 
posts. Instagram and Pinterest had a greater proportion 
of posts that contained “mostly false” claims, whereas 
YouTube had a greater proportion of videos with “mostly 
true” claims. “Mostly false” and “false” medical claims 

regarding POP were identified in 10 of 82 (12.2%) of the 
posts (0% YouTube videos, 15% Instagram posts, and 
17% Pinterest posts).

Social media misinformation about POP most 
frequently arises from fabricated content (4 of 10), false 
connection (5 of 10), or misleading content (6 of 10). 
For example, one video included chemotherapy and 
radiation as a nonsurgical treatment option for POP 
(fabricated content) and another post misrepresented 
an article published in the journal Nature to claim that 
starvation and dysbiosis were prominent risk factors 
for POP (false connection).

Of 82 misinformative posts, 8.5% were found 
to be “probably harmful” (6% YouTube videos, 3% 
Instagram posts, and 21% Pinterest posts). Among 
these 7 posts, harmful inaction (5 of 7 posts) and 
economic harm (5 of 7 posts) were the most common 
types of harm, suggesting that harmful misinforma-
tion may result in delays of care and/or more expensive 
alternative routes of treatment (Table 1). For exam-
ple, one post advertised silicone pads and guaranteed 
symptom improvement without scientific evidence 
(economic harm). Others encouraged their audience to 
forgo assessment by a doctor and pursue a pelvic floor 
physiotherapist instead (harmful inaction).

Regarding the reach of these 7 “probably harm-
ful” posts, 5 of these posts came from Pinterest, with  
a modest reach of around 1000 to 4000 followers.  
The 1 Instagram post by a health blogger had the 
greatest reach with over 100 000 followers, and the  
1 YouTube post by a doctor in Bangalore had the 
lowest reach with fewer than 200 subscribers and  
400 views (Table 1).

Discussion
In this novel investigation assessing the categor y 
and quantity of misinformation and resultant harm 
regarding POP on YouTube, Pinterest, and Instagram, 
our data show a significant difference in distribution 
of m isi n for mat ion across plat for ms , a nd t hat 
misinformative posts regarding a benign condition can 
also result in harm, most frequently harmful inaction 
and economic harm and most frequently in Pinterest 
posts and least frequently in YouTube posts. These 
findings are congruent with a previous study by Morra 
et al. who found that YouTube is considered a reliable 
source of information on bladder pain syndrome, with 
more than 70% of videos receiving good or excellent 
global quality scores and more than 80% having no 
misinformation[6].

Limitations of the study are that the data were 
gathered from a small subset of posts and may not 
be generalizable to all medical-related content across  

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all social media platforms. Further limitations include 
the subjective nature of scoring and the selection of 
just 3 of dozens of social media platforms. While our 
methodology attempted to standardize review using 
multiple reviewers, subjectivity is naturally introduced 
when using nonbinary metrics for harm, where it is not 
possible to track which consumers of media pursued 
specif ic treatments and whet her resu ltant harm 
ensued. Furthermore, while YouTube, Instagram, and 
Pinterest are among the top 15 social media platforms 
used globally, Facebook, the social media platform with 
the greatest number of daily and monthly users, was 
not included in our study because of the private nature 
of many pages and accounts that limited analysis of  
this magnitude.

Conclusion
The rise of social media as a prominent source of 
healthcare information has outpaced research on its 
reliability and safety. Our research demonstrates the 
potential harms of various types of misinformation, 
even in a benign condition that impacts quality of life. 
Uniquely, our data help further categorize and quantify 
the specific type of misinformation across multiple 
social media platforms and sets the groundwork for 
analyzing the reach and impact of these posts. These 
data can help guide larger-scale policy changes, such as 
mandatory textual warnings underneath misinformative 
health posts, and help providers tailor medical 
education to best communicate patient diagnoses and  
treatment options.

References

1. Ventola CL. Social media and health care professionals: benefits, 
risks, and best practices. PT. 2014;39(7):491–520. PMID: 25083128; 
PMCID: PMC4103576.

2. Johnson SB, Parsons M, Dorff T, Moran MS, Ward JH, Cohen SA, et al. 
Cancer misinformation and harmful information on Facebook and other 
social media: a brief report. J Natl Cancer Inst.2022;114(7):1036–1039. 
doi: 10.1093/jnci/djab141. PMID: 34291289; PMCID: PMC9275772.

3. Barber MD, Maher C. Epidemiology and outcome assessment of pelvic 
organ prolapse. Int Urogynecol J.2013;24(11):1783–1790. doi: 10.1007/
s00192-013-2169-9. PMID: 24142054.

4. Pace L A , Herber t AS, Malik RD. Characteristics of pelvic 
organ prolapse content available on social media. Neurourol 
Urodyn.2021;40(5):1165 –1174. doi: 10.1002/nau.24673. PMID: 
33834557.

5. Wardle C, Derakhshan H. Information disorder: toward an 
interdisciplinary framework for research and policy making. Council 
of Europe report DGI (2017)09. Available at: https://rm.coe.int/
information-disorder-toward-an-interdisciplinary-framework-for-
researc/168076277c. Accessed January 29, 2023.

6. Morra S, Collà Ruvolo C, Napolitano L, La Rocca R, Celentano 
G, Califano G, et al. YouTubeTM as a source of information on 
bladder pain syndrome: a contemporar y analysis. Neurourol 
Urodyn. 2022;41(1):237–24 5. doi: 10.10 02 /nau.24 8 02. PMID: 
34559920.

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Harm Related to Social Media Misinformation on Pelvic Organ Prolapse in YouTube, Instagram, and Pinterest Posts

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TABLE 1. 

Descriptive data for posts identified “Probably Harmful” medical claims regarding POP 

In your opinion, are the medical  
claims within the social media  

post/video accurate?

Which section, if 
applicable, contained 
the misinformation?

What was misinformative 
 about the post?

How would you 
categorize the medical 

claims made?

How would you categorize 
the type of harm caused by 

the medical claims?

Do you think there was 
purposeful intent by the 
creator to cause harm?

Number 
of likes or 

pins

Number 
of views

Publisher type Speaker type
Number of 

followers or 
subscribers

Pinterest

Mostly false Caption, Title, Hyperlink
Advertises silicone pad product  

(not evidence based)

Fabricated content Harmful inaction
Likely intentional 54

Commercial 
media/ industry

Industry 991
Misleading content Economic harm

Mostly false Image, Hyperlink
Advertised book that proposes cure to urinary 

incontinence with Kegel exercises

Misleading content Harmful inaction

Likely intentional
Commercial 

media/industry
Industry 1100

False context Economic harm

Mostly false Hyperlink

Claims that OB GYN doctors are not trained to 
diagnose pelvic floor dysfunction or prolapse 
and that pursuing OB GYN evaluation is not 

the best course of action

Fabricated content
Harmful inaction

Likely intentional
Consumer/

patient
Health blogger 4100

Misleading content

Manipulated content
Economic harm

False context

Mostly false
Image, Caption, Title, 

Hyperlink

Claims that starvation and dysbiosis are 
prominent risk factors for POP using out-of-

context Nature article findings

Misleading content
Harmful inaction

Uncertain if harm was 
intentional

Consumer/
patient

Health blogger 4100
Manipulated content

False connection
Economic harm

False context

Mixture of both true and false
Hyperlinked website 

to post
Claims that tight hip flexors could cause pelvic 

discomfort
Fabricated content

Economic harm Likely intentional
Consumer/

patient
Physical therapist 2

Manipulated content

YouTube

Mixture of both true and false Video
Claims that radiation and chemotherapy are 

nonsurgical options to treat POP
Fabricated content

Harmful action

Likely intentional 0 421 Doctor Doctor 196Harmful interactions

Economic harm

Instagram

Mixture of both true and 
false

Caption
Advertises electronic pelvic stimulator 

product (not evidence based)

Fabricated content Harmful action

Likely intentional 839
Health/wellness 

group
Health blogger 111 000

Harmful inactionMisleading content

Manipulated content Economic harm

POP: pelvic organ prolapse.

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TABLE 1. 

Descriptive data for posts identified “Probably Harmful” medical claims regarding POP 

In your opinion, are the medical  
claims within the social media  

post/video accurate?

Which section, if 
applicable, contained 
the misinformation?

What was misinformative 
 about the post?

How would you 
categorize the medical 

claims made?

How would you categorize 
the type of harm caused by 

the medical claims?

Do you think there was 
purposeful intent by the 
creator to cause harm?

Number 
of likes or 

pins

Number 
of views

Publisher type Speaker type
Number of 

followers or 
subscribers

Pinterest

Mostly false Caption, Title, Hyperlink
Advertises silicone pad product  

(not evidence based)

Fabricated content Harmful inaction
Likely intentional 54

Commercial 
media/ industry

Industry 991
Misleading content Economic harm

Mostly false Image, Hyperlink
Advertised book that proposes cure to urinary 

incontinence with Kegel exercises

Misleading content Harmful inaction

Likely intentional
Commercial 

media/industry
Industry 1100

False context Economic harm

Mostly false Hyperlink

Claims that OB GYN doctors are not trained to 
diagnose pelvic floor dysfunction or prolapse 
and that pursuing OB GYN evaluation is not 

the best course of action

Fabricated content
Harmful inaction

Likely intentional
Consumer/

patient
Health blogger 4100

Misleading content

Manipulated content
Economic harm

False context

Mostly false
Image, Caption, Title, 

Hyperlink

Claims that starvation and dysbiosis are 
prominent risk factors for POP using out-of-

context Nature article findings

Misleading content
Harmful inaction

Uncertain if harm was 
intentional

Consumer/
patient

Health blogger 4100
Manipulated content

False connection
Economic harm

False context

Mixture of both true and false
Hyperlinked website 

to post
Claims that tight hip flexors could cause pelvic 

discomfort
Fabricated content

Economic harm Likely intentional
Consumer/

patient
Physical therapist 2

Manipulated content

YouTube

Mixture of both true and false Video
Claims that radiation and chemotherapy are 

nonsurgical options to treat POP
Fabricated content

Harmful action

Likely intentional 0 421 Doctor Doctor 196Harmful interactions

Economic harm

Instagram

Mixture of both true and 
false

Caption
Advertises electronic pelvic stimulator 

product (not evidence based)

Fabricated content Harmful action

Likely intentional 839
Health/wellness 

group
Health blogger 111 000

Harmful inactionMisleading content

Manipulated content Economic harm

POP: pelvic organ prolapse.

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Harm Related to Social Media Misinformation on Pelvic Organ Prolapse in YouTube, Instagram, and Pinterest Posts

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