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Understanding the influence of social media in medicine: Lesson learned from Facebook

DOI:10.5070/D3209023923
Authors:
Jessica Savas at Wake Forest School of Medicine
Jessica Savas
Karen E Huang
Karen E Huang
Karen E Huang
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Sara moradi tuchayi at Massachusetts General Hospital
Sara moradi tuchayi
Steven R Feldman
Steven R Feldman
Steven R Feldman
  • This person is not on ResearchGate, or hasn't claimed this research yet.
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Abstract and Figures

Atopic dermatitis is a very common chronic skin disease. With increasing number of patients searching social media outlets such as Facebook for medical information, social media can be used by physicians as a powerful educational tool. We analyzed the unmoderated Q&A series on Facebook begun by members of National Eczema Association Scientific Advisory Committee. Four respondents accounted for more than 50% of all responses and the most common were negative posts about topical steroids (61%). Possible strategies to accomplish the safe dissemination of information in a public forum may include a moderator role for physicians.
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Dermatology Online Journal
UC Davis
Title:
Understanding the influence of social media in medicine: lesson learned from facebook
Journal Issue:
Dermatology Online Journal, 20(9)
Author:
Savas, Jessica A, Wake Forest School of Medicine
Huang, Karen E, Wake Forest School of Medicine
Tuchayi, Sara Moradi, Wake Forest School of Medicine
Feldman, Steven R, Wake Forest School of Medicine
Publication Date:
2014
Publication Info:
Dermatology Online Journal
Permalink:
http://escholarship.org/uc/item/2099j0z1
Keywords:
Atopic dermatitis, eczema, social media
Local Identifier:
doj_23923
Abstract:
Atopic dermatitis is a very common chronic skin disease. With increasing number of patients
searching social media outlets such as Facebook for medical information, social media can
be used by physicians as a powerful educational tool. We analyzed the unmoderated Q&A
series on Facebook begun by members of National Eczema Association Scientific Advisory
Committee. Four respondents accounted for more than 50% of all responses and the most
common were negative posts about topical steroids (61%). Possible strategies to accomplish the
safe dissemination of information in a public forum may include a moderator role for physicians.
Copyright Information:
Copyright 2014 by the article author(s). This work is made available under the
terms of the Creative Commons Attribution-NonCommercial-NoDerivs4.0 license, http://
creativecommons.org/licenses/by-nc-nd/4.0/
Volume 20 Number 9
September 2014
Letter
Understanding the influence of social media in medicine: lesson learned from Facebook
Jessica A. Savas BS1, Karen E. Huang MS1, Sara Moradi Tuchayi MD MPH1, Steven R. Feldman MD PhD1,2,3
Dermatology Online Journal 20 (9): 16
Center for Dermatology Research, Departments of 1Dermatology, 2Pathology and 3Public Health Sciences;
Wake Forest School of Medicine; Winston-Salem, North Carolina
Correspondence:
Sara Moradi Tuchayi, MD, MPH
Department of Dermatology
Wake Forest University School of Medicine
4618 Country Club Road
Winston-Salem, North Carolina 27104
Phone: 336-716-7740, Fax: 336-716-7732, E-mail: Samo_1985@yahoo.com
Abstract
Atopic dermatitis is a very common chronic skin disease. With increasing number of patients searching social media outlets such
as Facebook for medical information, social media can be used by physicians as a powerful educational tool. We analyzed the
unmoderated Q&A series on Facebook begun by members of National Eczema Association Scientific Advisory Committee. Four
respondents accounted for more than 50% of all responses and the most common were negative posts about topical steroids
(61%). Possible strategies to accomplish the safe dissemination of information in a public forum may include a moderator role for
physicians.
Keywords: Atopic dermatitis, eczema, social media
Introduction
Atopic dermatitis, or eczema, is arguably the most common inflammatory skin condition with childhood prevalence rates as high
as 20% in 2003 and steadily increasing [1]. Although most individuals outgrow their disease it may persist or demonstrate a
protracted course, often requiring lifelong management and the expenditure of millions of healthcare dollars. Given the chronic
nature of atopic dermatitis, patient education is paramount to ensuring adherence to treatment regimens and optimizing long-term
outcomes. The Internet could be a useful tool for meeting these education needs.
By 2010, the percentage of Americans with access to the Internet reached 75%, a figure that represented a more than 50% increase
since 1995 [2]. Americans are also increasingly turning to the Internet and social media in search of answers to health-related
questions. Reportedly, 88% of Americans search for medical information online and 20% specifically search social media outlets
such as Facebook, Twitter, BlogSpot, and YouTube [3]. Furthermore, a significant number of these patients report that the
information found on these sites will “likely” or “very likely” influence their future health care decisions [4]. These statistics
highlight the overwhelming need for physicians to establish a presence in social media forums.
The purpose of this paper is to describe a potential pitfall from the use of social media as an educational tool and to discuss
strategies to avoid similar scenarios.
Methods
The National Eczema Association (NEA) is the leading patient education and advocacy group for patients with eczema and has
recognized the potential value of using social media to educate patients. Responses to a post by a leading expert on atopic
dermatitis on the NEA official Facebook page were de-identified, categorized, and analyzed.
A NEA Scientific Advisory Committee member recently composed a post on the NEA’s official Facebook page suggesting that
patient fear of the adverse effects associated with topical steroid use may interfere with adherence and thus effective management.
The post concluded with a query to the public: “Do you have steroid phobia? Who or what scared you about using topical
steroids?” The discussion that ensued provided insight into what can happen when misinformation is promoted by a few
individuals in an unregulated manner. The Wake Forest University School of Medicine Institutional Review Board approved this
study.
Results
Figure 1. Number of people with definite post numbers - Four respondents accounted for more than 50% of all responses.
There were 206 responses by 40 respondents (Figure 1). Four respondents accounted for more than 50% of all responses. The
most common topics of the responses were negative posts about topical steroids (61%), posts mentioning personal experiences
(37%), and posts including side effects (26%) (Table 1).
Albeit the minority opinion, the direction and tone of the discussion was largely dictated by one or two dissenting opinions who
spread a radical message of fear and distrust of health professionals. Several claims that topical steroid use had worsened or
actually caused their eczema were made along with reports that the years of “topical steroid addiction” and “topical steroid
withdrawal” symptoms were far worse than eczema itself. One individual claimed that after being prescribed topical steroids they
had gained fifty pounds and developed cirrhosis of the liver. Perhaps more alarming than the exhausting list of alleged side effects
was the mal-intent that several posters assigned to the physicians prescribing the medications. Multiple claims were made that
topical steroids are overprescribed because physicians are lazy or incompetent and do not actually understand the natural course of
eczema. Moreover, a general attitude of anger towards medical professionals for “down-playing” the side effects and purposely
withholding information in an effort to manipulate patient decisions permeated the message board.
Conclusions
There is growing recognition of the importance of patient education in atopic dermatitis. To provide this education in an efficient
manner, “atopic dermatitis schools” have been developed and tested. A further step in the modernization is the use of social
media to provide education. The potential pitfall of this approach is illustrated by the non-moderated Facebook discussion on
topical steroid phobia.
A study by Coviello et al has confirmed that individual expression of emotions depends on what others in an individual's social
network are expressing. The estimated ratio of the indirect to the direct effect in this study was 1.5:1. These results imply that
emotions themselves might ripple through social networks to generate large-scale synchrony that gives rise to clusters of happy
and unhappy individuals [5].
Unexpected consequences may result when medical information is espoused by non-medical professionals in an open forum.
Among these, the fear and distrust of medical professionals with the attendant dismissal of any and all physician
recommendations. The downstream effects of this may result in unnecessary and avoidable office visits for “refractory” disease
and/or “treatment-related adverse effects” owing to a lack of or improper use of medications. Additionally, the amount of time
required to dispel any misconceptions a patient may have acquired online takes up valuable time during an office visit.
The way the initial question was worded in this study, "Do you have steroid phobia? Who or what scared you about using topical
steroids?" is likely to have influenced the outcome. This wording may have predisposed respondents to express their fears.
Although a more neutral question may have been less likely to induce the observed responses, this study illustrates what can
happen when a controversial medical issue such as this is discussed in an open forum.
Although expert’s beginning questions require careful neutral construction, possible strategies to accomplish the safe and
responsible dissemination of information may include a role for a moderator. Given that a public forum is open to a variety of
opinions, some based on reasonable information and others less so, the moderator’s primary responsibility would be to correct any
postings characterized by misinformation and to provide evidence-based resources to which patients can reliably turn.
As medicine ventures into the world of social media, the burden may fall on physicians to ensure that these forums remain a
valuable tool, rather than a barrier to care that must be overcome.
References
1. Wuthrich B, Schmid-Grendelmeier P (2003) The atopic eczema/dermatitis syndrome. Epidemiology, natural course, and
immunology of the IgE associated(‘‘extrinsic’’) and the nonallergic (‘‘intrinsic’’) AEDS. J Investig Allergol Clin Immunol
13:1–5. [PMID: 12861844]
2. Fox S. The power of mobile. September 2010. http://www.pewinternet.org/commentary/2010/September/The-Power-of-
Mobile. Accessed September 21, 2013.
3. Keckley PH. 2011 Survey of Health Care Consumers in theUnited States: key findings, strategic implications.
October2011.http://www.deloitte.com/assets/DcomUnited%20States/Local%20Assets/Documents/US_CHS_2011ConsumerS
urveyinUS_062111.pdf. Accessed September 21, 2013.
4. Lincoln N.1 in 5 Americans use social media for health careinformation. February
2011.http://hcmg.nationalresearch.com/public/News.aspx?ID=9. Accessed September 21, 2013.
5. Coviello L, Sohn Y, Kramer AD, Marlow C, Franceschetti M, Christakis NA, Fowler JH. Detecting emotional contagion in
massive social networks. PLoS One. 2014 Mar 12;9(3):e90315. doi: 10.1371/journal.pone.0090315. eCollection 2014.
[PMID: 24621792]
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... In contrast to this finding, upon analysis of the posts by popular skin cancer groups, it was found that the majority of the posts were focused on risks, using fear as a persuasive strategy [30]. There exist a large number of unmoderated discussions on Facebook, which include respondents perpetuating negative claims such as about addiction due to steroids, toxic effects of steroids and even accusing physicians of withholding valuable information [41]. ...
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Detecting emotional contagion in massive social networks
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