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Fake news, influencers and health-related professional participation on the Web: A pilot study on a social-network of people with Multiple Sclerosis

Published:August 01, 2018DOI:https://doi.org/10.1016/j.msard.2018.07.046

      Highlights

      • People with Multiple Sclerosis search on social media information about their disease.
      • Searching on the web puts patients at risk to accessing fake news.
      • In SMsocialnetwork authors of fake news are never appointed as Influencers.

      Abstract

      Background

      Over the last few decades, patients have increasingly been searching for health information on the Internet. This aspect of information seeking is important, especially for people affected by chronic pathologies and require lifelong treatment and management. These people are usually very well informed about the disease but are nonetheless vulnerable to hopes of being cured or saved, often amplified by misinformation, myths, legends, and therapies that are not always scientifically proven. Many studies suggest that some individuals 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 questionnaire 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 treatments.

      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.

      Keywords

      1. Introduction

      In the age of the Internet, social media are the most important places to share interests, information and personal experiences, overcoming daily limitations of space and time (
      • Dowerah Baruah T.
      Effectiveness of Social Media as a tool of communication and its potential for technology enabled connections: A micro-level study.
      ). People with health issues may use social media to increase their knowledge about disease and treatments (
      • McMullan M.
      Patients using the Internet to obtain health information: How this affects the patient–health professional relationship.
      ;
      • White M.
      • Dorman S.M.
      Receiving social support online: implications for health education.
      ;
      • Lavorgna L.
      • RussoA DeStefanoM.
      • Lanzillo R.
      • Esposito S.
      • Moshtari F.
      • Rullani F.
      • Piscono K.
      • Buonanno D.
      • Brescia Morra V.
      • Gallo A.
      • Tedeschi G.
      • Bonavita S.
      Health-related coping and social interaction in people with multiple sclerosis supported by a social network: pilot study with a new methodological approach.
      ), frequently considering the web as their main source of information, often hindering patient-doctor relationships (
      • McMullan M.
      Patients using the Internet to obtain health information: How this affects the patient–health professional relationship.
      ;
      • Moorhead S.A.
      • Moorhead A.S.
      • Hazlett D.E.
      • Carrol J.K.
      • Irwin A.
      • Hoving C.
      A new dimension of health care: systematic review of the uses, benefits, and limitations of social media for health communication.
      ;
      • Bartlett C.
      • Simpson K.
      • Turner R.
      Patient access to complex chronic disease records on the Internet.
      ;
      • Hesse B.W.
      • Nelson D.E.
      • Kreps G.L.
      • Croyle R.T.
      • Arora N.K.
      • Rimer B.K.
      • Viswanath K.
      The impact of the internet and its implications for health care providers: findings from the first health information national trends survey.
      ), in particular for chronic conditions (
      • Bartlett C.
      • Simpson K.
      • Turner R.
      Patient access to complex chronic disease records on the Internet.
      ) requiring lifelong treatment and management. Multiple Sclerosis (MS) is a complex and heterogeneous neurological disease, with different levels of disability and clinical courses (relapsing-remitting or progressive).
      MS usually starts in young adulthood and nowadays newly-diagnosed people are the millennials (
      • Hansen M.R.
      • Okuda D.T.
      Multiple Sclerosis in the contemporary age: understanding the millennial patient with multiple sclerosis to create next-generation care.
      ;
      • Hart D.
      • Joing S.
      The Millennial Generation and “The Lecture”.
      ). They belong to the digital native generation and therefore they are used to surfing on the web for all aspects of their daily life (e.g. wishes, studies, sports, care, diet, etc.), so the millennial people with MS (pwMS) tend to subscribe to forums, chats, blogs and/or social networks, to share their experiences as User/Patients (UP). pwMS are usually very well informed about the disease but are nonetheless vulnerable to hopes of being cured or saved, often amplified by misinformation, myths, legends on therapies whose efficacy is not scientifically proven. Therefore, searching on the web puts them at risk to accessing fake news i.e. deceiving stories containing partial truths or stories that are speculative and not based on evidence (
      • Prakash P.P.
      First Published Science and the “fake news” conundrum.
      ).
      There are some models and theories to explain UP's behaviours towards social networks. Among these, we based our study on the theoretical framework of Boyd and Ellison (
      • Boyd D.
      • Ellison N.
      Social network sites: definition, history, and scholarship.
      ), implemented with the model of Unified Theory of Acceptance and Use of Technology (UTAUT) (
      • Venkatesh V.
      • Morris M.G.
      • Davis G.B.
      Davis FD user acceptance of technology: toward a unified view.
      ), on four predictors for use behaviour (performance expectancy, social influences, effort expectancy, and facilitating conditions), and extension thereof (
      • Shen K.N.
      • Khalifa M.
      A research framework on social networking sites usage: critical review and theoretical extension from book software services for e-World: 10th IFIP WG 6.11.
      ).
      We took in consideration the following UP attitudes: (1) willingness to chat, share with friends, not really considering health-related information (
      • Boyd D.
      • Ellison N.
      Social network sites: definition, history, and scholarship.
      ); (2) visiting social networks occasionally as a mean of communication (
      • White M.
      • Dorman S.M.
      Receiving social support online: implications for health education.
      ); (3) looking for a specific response to a question or for specific information (
      • Van de Belt H.T.
      • Engelen L.J.
      • Berben S.A.A.
      • Teerenstra S.
      • Samsom M.
      • Schoonhoven L.
      Internet and social media for health-related information and communication in health care: preferences of the dutch general population.
      ); (4) being an Influencer (
      • Morone F.
      • Min B.
      • Bo L.
      • Makse H.
      Collective Influence Algorithm to find Influencers via optimal percolation in massively large social media.
      ). The latter can be considered as a web-version of opinion leader (
      • Bodendorf F.
      • Kaiser C.
      Detecting opinion leaders and trends in online communities.
      ).
      Traditionally the opinion leader is defined as “someone whose opinions are highly respected and utilized by the respondents to help in decision making across a variety of situations, such as what types of clothes to wear, where to have major household items repaired, how to discipline children, and who to vote for in political election (
      • Cosmas S.C.
      • Shet J.
      Identification of opinion leaders across cultures: an assessment for use in the diffusion of innovations and ideas.
      ) or as “individuals who exert an unequal amount of influence on the decisions of others” (
      • Rogers E.M.
      • Cartano G.
      Methods of measuring opinion leadership.
      ). On the other hand,
      • Nogueira M.
      • Baltazar C.
      • Braga C.
      Communication of organization and digital Influencers.
      defined Influencers in the web as “individuals who exert influence within certain social groups”.
      Therefore, the Influencers can be considered the web version of opinion leaders, as they influence the group they belong to.
      The role of Influencers in the web communities of patients could be critical for the risk of spreading fake news. Thus, in 2012, a social-network completely dedicated to pwMS was created (SMsocialnet-work.com) by a group of neurologists and psychologists of the Ist Clinic of Neurology of the University of Campania “Luigi Vanvitelli” with vast experience in MS. This social network aimed to protect UP from fake news, while preserving their right to expectancy and sharing their fears.
      SMsocialnetwork.com is a true social network with active users (AU), people with MS/users (pwMSU), Neurologists and Psycologists who are fully registered on the website, and visitors (accessing open-access content of the website) (
      • Lavorgna L.
      • RussoA DeStefanoM.
      • Lanzillo R.
      • Esposito S.
      • Moshtari F.
      • Rullani F.
      • Piscono K.
      • Buonanno D.
      • Brescia Morra V.
      • Gallo A.
      • Tedeschi G.
      • Bonavita S.
      Health-related coping and social interaction in people with multiple sclerosis supported by a social network: pilot study with a new methodological approach.
      ). In this virtual environment pwMSU can write, read, and listen to everything they may be interested in; however, the exchange of medical information is under the supervision of MS neurologists and psychologists, who oversee the public activities of users, posts with relevant information about MS, and answer questions via private or public messages. The intervention does not include banning pwMSU or the cancellation of posts with inaccurate medical information but involves explaining why that specific post is fake news.
      In the present study, by analyzing the posts contents of AU and by asking them to identify Influencers in the platform, we aimed to verify whether AU pinpointed as Influencers shared reliable posts or fake news.

      2. Methods

      This cross-sectional web-based study was performed in accordance with good clinical practice and the Declaration of Helsinki. The study was approved by the local ethics committee of University of Campania “Luigi Vanvitelli”. All participants consented to the use of recorded questionnaires for scientific purposes on an aggregate level. To protect the anonymity of the participants (because they use a pseudonym), the Internet protocol codes of the computers were not registered, and no electronic “cookies” were embedded.

      2.1 Data collection and analysis

      In the first part of the study, we collected the posts published on the public wall of SMsocialnet- work from April to June 2015 and two experts (one neurologist and one psychologist with specific MS knowledge) classified the posts into those with scientific or medical content, and those concerning social interactions or of general interest. The two experts were blind to the users/authors of the posts, as previously performed in similar studies (
      • Mathieu E.
      • Ke McGeechan K.
      • Barratt A.
      • Herbert R.
      Internet-based randomized controlled trials: a systematic review.
      ).
      Afterwards, among the posts with scientific or medical content, experts distinguished those with fake news from those with scientifically-correct content. In particular, any post including information that did not reflect a scientific truth or partially including scientifically based information th at might have generated possible misinterpretation, was appointed as “fake news”.
      In the second part of the study we gave a two items questionnaire to the SMsocialnetwork community: considering the last three months (April, May and June 2015) (1) who the three users providing the most reliable advice for daily life with MS are (2) who the three users providing the most useful information about MS treatment are.
      The questionnaire was available on SMsocialnetwork.com in the two months (July–August 2015) following the period of post collection. Each user could fill out the survey only once and was blind to other users’ answers.

      3. Results

      From April to June 2015, SMsocialnetwork.com included 1020 AU.
      We collected 1800 posts from the SMsocialnetwork public wall. Among these, the two experts identified 380 posts with medical content (126 posts per month, on average). Among them, 308 reported scientific and relevant medical information, whereas 72 posts included fake news. The remaining 1420 posts were of general interest, such as movies, the weather, music, walks, travels etc.
      Considering the second part of the study, 130 questionnaires were completed (31% UP males and 69% UP females). According to a previous study, (
      • Dong Y.
      • Peng C.Y.J.
      Principled missing data methods for researchers.
      ) we excluded the questionnaires with >20% missing data (35,6%) from the final analysis.
      Regarding the first query (the users providing the most reliable advice for daily life with MS) the appointed users were TT (appointed 69 times), CM (57 times) and PV (56 times). Regarding the second query (the users providing the most useful information about MS treatment) the appointed users were LL (70 times), VT (60 times) and MO (53 times). Lastly, we disclosed the authors of the posts.
      Four of the six appointed AU had written only posts with relevant medical information and never fake news: three of these (VT, MO and TT) were patients and 1 (LL) was a Neurologist.
      The remaining two (CM and PV) had written only posts about general interests (movies, the weather, music, walks, travels etc.).
      The average number of posts for AU were 47. The CM and PV users published 270 and 480 posts respectively on the public wall.

      4. Discussion

      In this study, we identified the fake news and evaluated the impact of the Influencers on the information flow on SMsocialnetwork.com. As already suggested for other chronic diseases (e.g. HIV (
      • Kalichman S.
      • Benotsch E.
      • Weinhardt AustinJ.
      • Luke W.
      • Cherry C.
      Health-related Internet use, coping, social support, and health indicators in people living with HIV/AIDS: preliminary results from a community survey.
      ) and heart disease (
      • Bjornsdottir Gyda.
      Online social support for individuals concerned with heart disease: observing gender differences.
      )), our findings showed that e SMsocialnetwork Influencers may provide reliable information on MS sharing scientifically correct information. In our study the identification of fake news and their authors has shown that the latter are never appointed as Influencers. Among the AU in SMsocialnetwork, we recognized the three most reliable users for suggestions in everyday life with MS and the three most reliable users for medical information, identifying, therefore, the six AU who exert influence, in other words the Influencers. Four of them had written only posts containing correct medical information and, particularly, three were pwMS, whereas one was a Neurologist, member of the staff supervising the social network. Those Influencers could be defined as the “medical Influencers” of SMsocialnetwork (
      • Lejbkowicz I.
      • Caspi O.
      • Miller A.
      Participatory medicine and patient empowerment towards personalized healthcare in Multiple Sclerosis Expert Rev.
      ). As concerns the two remaining Influencers, sharing a huge amount of posts only concerning 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 conversations. Thus, they could be defined the “social Influencers” of SMsocialnetwork.
      Over the last few decades, several studies have investigated the patients online experience in different fields and the effect of fake news dissemination.
      • Chomutare T.
      • Arsand E.
      • Fernandez-Luque L.
      • Lauritzen J.
      • Hartvigsen G.
      Inferring community structure in healthcare forums: an empirical study.
      studied the dynamics of online communities of diabetes patients, and they found that the most centric members (those with more trust within the communities) tend to have more years of experience with disease: many of these patients have become experts in their disease and provide a great amount of valuable information for their peers. Likewise, patients with cancer could be also effective in controlling the quality of health information (
      • Esquivel A.
      • Meric-Bernstam F.
      • Bernstam E.V.
      Accuracy and self correction of information received from an internet breast cancer list: content analysis.
      ), thus highlighting the importance of experienced patients in the control of online health information. In our study we confirm the centric role of patients as Influencers of SMsocialnetwork.com underlining the importance of their opinion or advice shared with the AU of the web community.
      Therefore, although in SMsocialnetwork.com we found posts with inaccurate medical information, we showed that these have never been shared by pwMS identified as Influencers.
      We speculate that SMsocialnetwork medical supervision might have had a positive effect by stimulating a critical evaluation of the published posts inducing AU to identify as Influencers people who shared correct information.
      Therefore, in the age of the web, it appears vital that health practitioners and public health and government agencies monitor social networks and mass media channels to avoid misconceptions and the spreading of health-related fake news.

      5. Limitation

      We excluded 35.6% of the surveys which had >20% of missing data from the final analysis; however, this is in line with the very high percentage of missing data generally observed in online surveys, where the anonymity allows inaccurate answers or untimely interruption of questionnaire (missing data range from 15% to 20%, in quantitative research) (
      • Dong Y.
      • Peng C.Y.J.
      Principled missing data methods for researchers.
      ).
      To demonstrate the positive effect of medical supervision on SMsocialnetwork, the comparison of our data with those of other social networks dedicated to MS without any medical supervision would be desirable; however, to the best of our knowledge, there are no social networks specifically dedicated to MS, beyond our website. Lastly, our results derive from data collected from a social network specifically dedicated to pwMS, therefore the generalization to other healthcare based social networks may not be straightforward.

      6. Conclusion

      SMsocialnetwork.com acted as a “web safe environment” where the “medical Influencers” contributed by sharing only correct medical information and never fake news. The members of the community were able to recognize the most reliable users. The presence of neurologists and psychologists supervising the information flow on SMsocialnetwork possibly contributed to enhance the critical evaluation of posts content and to reduce the risk to appoint posts containing fake news as reliable.
      In the future, the information flow on MS-specific websites should be investigated on larger populations. In the meantime, this study gives a positive outlook on Social Media and the Internet, where the presence of experts is needed, recognized and appreciated. The Internet is changing doctor-patient relationship and should be considered an opportunity to make patients more aware of their disease and management thereof (
      • Potts H.W.
      • Jeremy C.V.
      Survey of doctors’ experience of patients using the Internet.
      ;
      • Zeng Q.T.
      • Tse T.
      Exploring and developing consumer health vocabularies.
      ). The multidisciplinary team taking care of pwMS should be formed and informed on the most recent Internet-based tools to satisfy the active information-seeking behaviour of pwMS (
      • MacLean R.
      • Russel A.
      Innovative ways of responding to the information needs of people with MS.
      ).

      Conflict of interest

      Authors declare no conflict of interest in relation to the current work.

      Funding

      No sources of funding were received.

      Acknowledgments

      This research received no specific funding from any agency in the public, commercial, or not-for-profit sectors. The authors would like to acknowledge Simone Eboli, Digital Humanist, for the web-development.

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