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Multiple Sclerosis and Related Disorders 25 (2018) 175–178

Contents lists available at ScienceDirect

Multiple Sclerosis and Related Disorders


journal homepage: www.elsevier.com/locate/msard

Fake news, influencers and health-related professional participation on the T


Web: A pilot study on a social-network of people with Multiple Sclerosis

L. Lavorgnaa, ,1, M. De Stefanoa,1, M. Sparacoa, M. Mocciab, G. Abbadessaa, P. Montellaa,
D. Buonannoa, S. Espositoa, M. Clericoc, C. Cencid, F. Trojsia, R. Lanzillob, L. Rosab,
V. Brescia Morrab, D. Ippolitoa, G. Maniscalcoe, A. Biseccoa, G. Tedeschia, S. Bonavitaa
a
Ist Clinic of Neurology, University of Campania “Luigi Vanvitelli”, Italy
b
Department of Neurosciences, Reproductive Sciences and Odontostomatology, Federico II University, Naples, Italy
c
Department of Biological and Clinical Sciences, University of Torino, Italy
d
Center for Digital Health Humanities, Rome, Italy
e
Multiple Sclerosis Center, Cardarelli Hospital, Naples, Italy

A R T I C LE I N FO A B S T R A C T

Keywords: Background: Over the last few decades, patients have increasingly been searching for health information on the
Fake news Internet. This aspect of information seeking is important, especially for people affected by chronic pathologies
Influencers and require lifelong treatment and management. These people are usually very well informed about the disease
Digital health but are nonetheless vulnerable to hopes of being cured or saved, often amplified by misinformation, myths,
Multiple Sclerosis
legends, and therapies that are not always scientifically proven. Many studies suggest that some individuals
E-health
prefer to rely on the Internet as their main source of information, often hindering the patient-doctor relationship.
A professional approach is imperative to maintain confidentiality, honesty, and trust in the medical profession.
Objective: we aimed to examine, in a medically supervised Italian web community (SMsocialnetwotk.com)
dedicated to people with Multiple Sclerosis (pwMS), the posts shared by users and to verify the reliability of
contents of posts shared by users pinpointed as Influencers through an online questionnaire.
Methods: we grouped the posts published on SMsocialnetwork from April to June 2015 into those with medical
content (scientifically correct or fake news), and those related to social interactions. Later, we gave a ques-
tionnaire to the community asking to identify the three users/Influencers providing the most reliable advice for
everyday life with MS and the three users/Influencers providing the most useful information about MS treat-
ments.
Results: 308 posts reported scientific and relevant medical information, whereas 72 posts included pieces of fake
news. 1420 posts were of general interest. Four out of the 6 Influencers had written only posts with correct
medical information (3 were pwMS, 1 was a Neurologist) and never any fake news. The remaining 2 appointed
Influencers (2 pwMS) had written only posts about general interests.
Conclusion: the identification of fake news and their authors has shown that the latter are never appointed as
Influencers. SMsocialnetwork.com acted as a “web safe environment” where the Influencers contributed by
sharing only correct medical information and never fake news. We speculate that the presence of neurologists
and psychologists supervising the information flow might have contributed to reduce the risk of fake news
spreading and to avoid their acquisition of authoritative meaning.

1. Introduction People with health issues may use social media to increase their
knowledge about disease and treatments (McMullan, 2006; White and
In the age of the Internet, social media are the most important Dorman, 2001; Lavorgna et al., 2017), frequently considering the web
places to share interests, information and personal experiences, over- as their main source of information, often hindering patient-doctor
coming daily limitations of space and time (Dowerah Baruah, 2012). relationships (McMullan, 2006; Moorhead et al., 2013; Bartlett et al.,


Corresponding author at: Ist Clinic of Neurology, University of Campania “Luigi Vanvitelli”, Piazza Miraglia, 2, Naples 80138, Italy.
E-mail address: luigi.lavorgna@policliniconapoli.it (L. Lavorgna).
1
The authors contributed equally to the manuscript.

https://doi.org/10.1016/j.msard.2018.07.046
Received 26 March 2018; Received in revised form 4 July 2018; Accepted 29 July 2018
2211-0348/ © 2018 The Authors. Published by Elsevier B.V. This is an open access article under the CC BY-NC-ND license
(http://creativecommons.org/licenses/BY-NC-ND/4.0/).
L. Lavorgna et al. Multiple Sclerosis and Related Disorders 25 (2018) 175–178

2012; Hesse et al., 2005), in particular for chronic conditions asking them to identify Influencers in the platform, we aimed to verify
(Bartlett et al., 2012) requiring lifelong treatment and management. whether AU pinpointed as Influencers shared reliable posts or fake
Multiple Sclerosis (MS) is a complex and heterogeneous neurological news.
disease, with different levels of disability and clinical courses (relap-
sing-remitting or progressive). 2. Methods
MS usually starts in young adulthood and nowadays newly-diag-
nosed people are the millennials (Hansen and Okuda, 2018; Hart and This cross-sectional web-based study was performed in accordance
Joing, 2011). They belong to the digital native generation and therefore with good clinical practice and the Declaration of Helsinki. The study
they are used to surfing on the web for all aspects of their daily life (e.g. was approved by the local ethics committee of University of Campania
wishes, studies, sports, care, diet, etc.), so the millennial people with “Luigi Vanvitelli”. All participants consented to the use of recorded
MS (pwMS) tend to subscribe to forums, chats, blogs and/or social questionnaires for scientific purposes on an aggregate level. To protect
networks, to share their experiences as User/Patients (UP). pwMS are the anonymity of the participants (because they use a pseudonym), the
usually very well informed about the disease but are nonetheless vul- Internet protocol codes of the computers were not registered, and no
nerable to hopes of being cured or saved, often amplified by mis- electronic “cookies” were embedded.
information, myths, legends on therapies whose efficacy is not scien-
tifically proven. Therefore, searching on the web puts them at risk to 2.1. Data collection and analysis
accessing fake news i.e. deceiving stories containing partial truths or
stories that are speculative and not based on evidence (Prakash, 2017). In the first part of the study, we collected the posts published on the
There are some models and theories to explain UP's behaviours to- public wall of SMsocialnet- work from April to June 2015 and two
wards social networks. Among these, we based our study on the theo- experts (one neurologist and one psychologist with specific MS
retical framework of Boyd and Ellison (Boyd and Ellison, 2008), im- knowledge) classified the posts into those with scientific or medical
plemented with the model of Unified Theory of Acceptance and Use of content, and those concerning social interactions or of general interest.
Technology (UTAUT) (Venkatesh et al., 2002), on four predictors for The two experts were blind to the users/authors of the posts, as pre-
use behaviour (performance expectancy, social influences, effort ex- viously performed in similar studies (Mathieu et al., 2013).
pectancy, and facilitating conditions), and extension thereof (Shen and Afterwards, among the posts with scientific or medical content,
Khalifa, 2010). experts distinguished those with fake news from those with scientifi-
We took in consideration the following UP attitudes: (1) willingness cally-correct content. In particular, any post including information that
to chat, share with friends, not really considering health-related in- did not reflect a scientific truth or partially including scientifically
formation (Boyd and Ellison, 2008); (2) visiting social networks occa- based information th at might have generated possible misinterpreta-
sionally as a mean of communication (White and Dorman, 2001); (3) tion, was appointed as “fake news”.
looking for a specific response to a question or for specific information In the second part of the study we gave a two items questionnaire to
(Van de Belt et al., 2013); (4) being an Influencer (Morone et al., 2016). the SMsocialnetwork community: considering the last three months
The latter can be considered as a web-version of opinion leader (April, May and June 2015) (1) who the three users providing the most
(Bodendorf and Kaiser, 2010). reliable advice for daily life with MS are (2) who the three users pro-
Traditionally the opinion leader is defined as “someone whose viding the most useful information about MS treatment are.
opinions are highly respected and utilized by the respondents to help in The questionnaire was available on SMsocialnetwork.com in the
decision making across a variety of situations, such as what types of two months (July–August 2015) following the period of post collection.
clothes to wear, where to have major household items repaired, how to Each user could fill out the survey only once and was blind to other
discipline children, and who to vote for in political election users’ answers.
(Cosmas and Shet, 1980) or as “individuals who exert an unequal
amount of influence on the decisions of others” (Rogers and 3. Results
Cartano, 1962). On the other hand, Nogueira et al. (2017) defined In-
fluencers in the web as “individuals who exert influence within certain From April to June 2015, SMsocialnetwork.com included 1020 AU.
social groups”. We collected 1800 posts from the SMsocialnetwork public wall.
Therefore, the Influencers can be considered the web version of Among these, the two experts identified 380 posts with medical content
opinion leaders, as they influence the group they belong to. (126 posts per month, on average). Among them, 308 reported scien-
The role of Influencers in the web communities of patients could be tific and relevant medical information, whereas 72 posts included fake
critical for the risk of spreading fake news. Thus, in 2012, a social- news. The remaining 1420 posts were of general interest, such as mo-
network completely dedicated to pwMS was created (SMsocialnet- vies, the weather, music, walks, travels etc.
work.com) by a group of neurologists and psychologists of the Ist Clinic Considering the second part of the study, 130 questionnaires were
of Neurology of the University of Campania “Luigi Vanvitelli” with vast completed (31% UP males and 69% UP females). According to a pre-
experience in MS. This social network aimed to protect UP from fake vious study, (Dong and Peng, 2013) we excluded the questionnaires
news, while preserving their right to expectancy and sharing their fears. with >20% missing data (35,6%) from the final analysis.
SMsocialnetwork.com is a true social network with active users Regarding the first query (the users providing the most reliable
(AU), people with MS/users (pwMSU), Neurologists and Psycologists advice for daily life with MS) the appointed users were TT (appointed
who are fully registered on the website, and visitors (accessing open- 69 times), CM (57 times) and PV (56 times). Regarding the second
access content of the website) (Lavorgna et al., 2017). In this virtual query (the users providing the most useful information about MS
environment pwMSU can write, read, and listen to everything they may treatment) the appointed users were LL (70 times), VT (60 times) and
be interested in; however, the exchange of medical information is under MO (53 times). Lastly, we disclosed the authors of the posts.
the supervision of MS neurologists and psychologists, who oversee the Four of the six appointed AU had written only posts with relevant
public activities of users, posts with relevant information about MS, and medical information and never fake news: three of these (VT, MO and
answer questions via private or public messages. The intervention does TT) were patients and 1 (LL) was a Neurologist.
not include banning pwMSU or the cancellation of posts with inaccurate The remaining two (CM and PV) had written only posts about
medical information but involves explaining why that specific post is general interests (movies, the weather, music, walks, travels etc.).
fake news. The average number of posts for AU were 47. The CM and PV users
In the present study, by analyzing the posts contents of AU and by published 270 and 480 posts respectively on the public wall.

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4. Discussion 6. Conclusion

In this study, we identified the fake news and evaluated the impact SMsocialnetwork.com acted as a “web safe environment” where the
of the Influencers on the information flow on SMsocialnetwork.com. As “medical Influencers” contributed by sharing only correct medical in-
already suggested for other chronic diseases (e.g. HIV (Kalichman et al., formation and never fake news. The members of the community were
2003) and heart disease (Bjornsdottir, 1999)), our findings showed that able to recognize the most reliable users. The presence of neurologists
e SMsocialnetwork Influencers may provide reliable information on MS and psychologists supervising the information flow on SMsocialnetwork
sharing scientifically correct information. In our study the identification possibly contributed to enhance the critical evaluation of posts content
of fake news and their authors has shown that the latter are never ap- and to reduce the risk to appoint posts containing fake news as reliable.
pointed as Influencers. Among the AU in SMsocialnetwork, we re- In the future, the information flow on MS-specific websites should
cognized the three most reliable users for suggestions in everyday life be investigated on larger populations. In the meantime, this study gives
with MS and the three most reliable users for medical information, a positive outlook on Social Media and the Internet, where the presence
identifying, therefore, the six AU who exert influence, in other words of experts is needed, recognized and appreciated. The Internet is
the Influencers. Four of them had written only posts containing correct changing doctor-patient relationship and should be considered an op-
medical information and, particularly, three were pwMS, whereas one portunity to make patients more aware of their disease and manage-
was a Neurologist, member of the staff supervising the social network. ment thereof (Potts and Jeremy, 2002; Zeng and Tse, 2006). The
Those Influencers could be defined as the “medical Influencers” of multidisciplinary team taking care of pwMS should be formed and in-
SMsocialnetwork (Lejbkowicz et al., 2012). As concerns the two re- formed on the most recent Internet-based tools to satisfy the active
maining Influencers, sharing a huge amount of posts only concerning information-seeking behaviour of pwMS (MacLean and Russel, 2005).
general topics (e.g. travels, studies, sports, etc.), we can speculate that
their leading position could be owing to the fact they took part in many Conflict of interest
conversations. Thus, they could be defined the “social Influencers” of
SMsocialnetwork. Authors declare no conflict of interest in relation to the current
Over the last few decades, several studies have investigated the work.
patients online experience in different fields and the effect of fake news
dissemination. Funding
Chomutare et al. (2013) studied the dynamics of online commu-
nities of diabetes patients, and they found that the most centric mem- No sources of funding were received.
bers (those with more trust within the communities) tend to have more
years of experience with disease: many of these patients have become Acknowledgments
experts in their disease and provide a great amount of valuable in-
formation for their peers. Likewise, patients with cancer could be also This research received no specific funding from any agency in the
effective in controlling the quality of health information (Esquivel et al., public, commercial, or not-for-profit sectors. The authors would like to
2006), thus highlighting the importance of experienced patients in the acknowledge Simone Eboli, Digital Humanist, for the web-develop-
control of online health information. In our study we confirm the ment.
centric role of patients as Influencers of SMsocialnetwork.com under-
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