COMMENTARY

Perspectives from the Patient and the HealthcareProfessional in Multiple Sclerosis: Social Mediaand Participatory Medicine

Daniel Kantor . Jeremy R. Bright . Jeri Burtchell

Received: August 18, 2017 / Published online: December 8, 2017� The Author(s) 2017. This article is an open access publication

ABSTRACT

When faced with a diagnosis of multiple scle-rosis (MS), patients often turn to the Internetand social media to find support groups, readabout the experiences of other people affectedby MS and seek their advice, and research theircondition and treatment options to discuss withtheir healthcare professionals (HCPs). Here, weexamine the use of social media and the Inter-net among patients with MS, considering itsimpact on patient empowerment and patientparticipation in treatment decision-making andMS research. These themes are exemplified withfirst-hand experiences of the patient author. Wealso explore the impact of the Internet andsocial media on the management of patientsfrom the perspective of HCPs, including newopportunities for HCPs to engage in

participatory medicine and to improve com-munication with and among patients. We con-sider both the benefits afforded to and thepotential pitfalls faced by HCPs when interact-ing with their patients via these routes, anddiscuss potential concerns around privacy andconfidentiality in the use of the Internet andsocial media in the clinical context. Commu-nication online is driving the evolution of thepatient–HCP relationship, and is empoweringpatients to participate more actively in thedecision-making process relating to the provi-sion of their health care.

Funding Novartis PharmaceuticalsCorporation.

Keywords: Internet; Multiple sclerosis; Online;Participatory medicine; Patient voice; Shareddecision-making; Social media; Web

INTRODUCTION

Individuals receiving a diagnosis of multiplesclerosis (MS) face many life-altering challenges.However, over the last decade, improved accessto high-quality information and the ability toshare experiences with other MS patientsthrough the Internet and social media havehelped patients become more knowledgeableabout their condition and about MS research,including their diagnosis, treatment options,

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D. Kantor (&)Florida Atlantic University, Boca Raton, FL, USAe-mail: info@KantorNeurology.com

J. R. BrightOxford PharmaGenesisTM Ltd, Oxford, UK

J. BurtchellHealthiVibe, LLC, Arlington, VA, USA

J. BurtchellPartners in Research, East Palatka, FL, USA

Neurol Ther (2018) 7:37–49

https://doi.org/10.1007/s40120-017-0088-2

and clinical trials. This has allowed patients tomanage their disease proactively and, in somecases, has afforded the opportunity to influenceclinical research. As early as 2007, a survey of2390AmericanswithMS reported Internet useby93% of participants (compared with 75% of thegeneral population), of whom 53% indicatedthat it had helped them to become their ownMSadvocate [1]. As well as being widespread amongpatients, the use of social media amongWesternhealthcare professionals (HCPs) has dramaticallyincreased in recent years, rising from 42% ofpracticing physicians in 2010 [2] to almost 75%in 2013 [3]. Among HCPs, 65% use social mediafor professional reasons, mostly in professionalnetworks and clinical practice, but also forinforming and helping patients [4–6].

Thesedevelopmentshaveempoweredpatientsto act more in partnership with their HCPs indeterminingwhat care they receive, shifting awayfrom a traditionally passive role to an active, self-governing one, with participatory decision-making playing a key part in determining treat-ment [7]. In this article, we aim to explore theimpact of virtually instant global access to infor-mation on the interaction between patients withMS, the HCPs who treat them, and the MS com-munity. These interactions are examined in termsof participatory medicine, of the direction of MSresearch, of the sharing of experiences amongpatients, and of the privacy and ethical consider-ations when using social media and the Internetin healthcare communications.

METHODS

This article offers qualitative case study-basedinsights from the patient and HCP authors,both of whom are from North America. As inour accompanying article, which examines theimpact of social media and the Internet onaspects of patient education, the HCP’s per-spective in this article is provided by an MSspecialist, Daniel Kantor, MD, FAAN, Past Pres-ident of the Florida Society of Neurology, Pres-ident of the Medical Partnership 4 MS, ChiefMedical Correspondent for MSWorld, and anactive member of the Multiple Sclerosis Foun-dation’s Medical Advisory Board and the

Multiple Sclerosis Association of America’sHealthcare Advisory Council. The patient’sperspective is provided by Jeri Burtchell, a clin-ical trials awareness activist, MS patient advo-cate, founder of Partners in Research, andDirector of Patient Initiatives at HealthiVibe,LLC. These perspectives are drawn together, inthe context of published research, by JeremyBright, a medical writer at Oxford PharmaGen-esis with a special interest in MS. This articlealso includes some of Jeri’s experiences sincereceiving an MS diagnosis in 1999, 3 monthsafter the onset of symptoms.

The patient’s perspective was provided asfollows: a Novartis employee drafted a set ofquestions for use in a subsequent interview withthe patient author (Jeri Burtchell). During theinterview, Jeri’s responses to these questionswere recorded. Unedited and non-paraphrasedquotes were taken directly from the recordingsand used as required throughout the manu-script. The HCP’s perspective was provideddirectly by the HCP author, Daniel Kantor. Tothe best of our knowledge, this ‘‘patient–HCPdyad’’ approach has not been used before toexplore patient and HCP perspectives regardingthe impact of the Internet and social media onthe interaction between members of the MScommunity. Adopting this novel approach thusenabled us to gain detailed and direct insightsinto specific issues not previously reported.

The patient and HCP perspectives describedin this article were provided by single individ-uals from the USA. As the insights yielded bythis approach are specific to the authors’ per-sonal experiences, the generalizability of thefindings may be limited as they may not berepresentative of those of the wider MS popu-lation and other HCPs. In order to minimizeany bias, a separate literature search was con-ducted to identify relevant articles that con-textualized the themes identified by both thepatient and HCP authors. Supporting publishedreferences and online resources relating toInternet and social media use in MS were iden-tified using MEDLINE and Google Scholar, withthe search strings ‘‘multiple sclerosis [Title/Ab-stract] AND social media [Title/abstract]’’ and‘‘multiple sclerosis [Title/Abstract] AND Internet[Title/Abstract]’’.

38 Neurol Ther (2018) 7:37–49

Compliance with Ethics Guidelines

This article does not contain any new studieswith human or animal subjects performed byany of the authors.

OVERVIEW OF KEY FINDINGS

In exploring the impact that the Internet andsocial media have had on interactions betweenmembers of the MS community, Jeri and Dr.Kantor’s perspectives could be grouped intofour major themes: (1) participatory medicineand the changing face of patient–HCP interac-tions; (2) promoting and fostering MS research;(3) sharing experiences and interpersonal con-tact; and (4) privacy, confidentiality, and ethicalconsiderations. In the following sections, wepresent Jeri and Dr. Kantor’s views on each ofthese topics and contextualize them in terms ofthe available literature. Two further sectionsoutlining the future potential of social mediaand concluding remarks from Jeri have alsobeen included to provide additional informa-tion on this topic.

PARTICIPATORY MEDICINE:CHANGING FACE OF PATIENT–HCPINTERACTION

Participatory medicine has been defined as amodel of cooperative health care that seeks toachieve active involvement by patients, HCPs,caregivers, and others across the continuum ofcare on all issues related to an individual’shealth [7, 8]. Participatory medicine is consid-ered to be an ethical approach to care that mayhelp to improve outcomes, reduce medicalerrors, increase patient satisfaction, and reducethe cost of care through partnership betweenpatients and their HCPs [7, 8].

Patient’s Perspective

In the traditional model of biomedical care (oneof medical paternalism), HCPs hold the positionof authority while patients assume a passive

role, following the instruction of their physi-cians with little input into the decision-makingprocess. Jeri was diagnosed with MS in 1999,3 months after the onset of symptoms. Below,Jeri recalls what little involvement she hadregarding the treatment she would receive.

‘‘At that second visit to my neurologist’soffice, when he gave me the bad news, wediscussed all the available treatmentoptions. They were all injectable drugs,only one of which was not an interferon.This was the drug my doctor chose for me.We didn’t choose together because, in myeyes, he was the expert and knew best.’’

Jeri would typically have three or fourrelapses annually for the first 7 years, and oftenhad to use a walker or a wheelchair for monthsat a time. Despite asking if she could switch to amore effective treatment, her HCP said sheshould remain on her current therapy.

‘‘When I asked my doctor about switching[treatment], I didn’t understand why hethought my drug was working when I washaving bona fide relapses requiring steroiduse several times per year.’’

‘‘At the time there were only four MS drugsand I was taking the only one that wasn’tan interferon. He insisted I stay on thetherapy I’d been on all along, reassuringme that my MS would be ‘so much worse’if I weren’t taking it.’’

‘‘I had no idea that I could challenge mydoctor, or even that I could find a new one.Since he was the only one in my town, Ifelt I had no choice. I was despondent thatI was relapsing so often and felt like thingsmight never get any better.’’

Central to the success of participatory med-icine is the dynamic between HCPs andpatients. While physicians bring their trainingand clinical expertise, patients bring their lifeexperiences, skills, and resilience, their deepinvestment in their long-term health, and aunique perspective on needs and priorities [9].Effective patient–HCP partnerships build trust,help patients feel informed, in control, andempowered, and promote shared decision-

Neurol Ther (2018) 7:37–49 39

making in effective and time-efficient consul-tations [10, 11]. Seven years after her initialdiagnosis, an opportunity arose for Jeri toengage with a different HCP.

‘‘In 2006 my neurologist had a stroke and Iwas left without a doctor. I would wind upat my PCP’s [primary care physician’s] officeevery time I had MS symptoms and hefinally convinced me in 2007 that I neededto see a new neurologist in a nearby city.’’

Jeri discussed the advantages and disadvan-tages of different treatments with her newneurologist. The interaction followed a partici-patory model, and Jeri’s interaction with theonline MS community helped her to becomemore assertive in the management of her care.

‘‘I didn’t want to take one of the interferonmedications (my only other option) due tothe fear I’d developed based on the strongfeelings my former neurologist hadregarding them, and also from reading somuch from patients online who sharedtheir ‘flu-like symptoms’ and feeling mis-erable on the medication.’’

‘‘Before the Internet, when first diagnosed,I depended on my neurologist. His opinionwas the final say about everything from useof steroids to physical therapy to whichdisease-modifying medicine I would use.The Internet empowered me as a patient tobecome informed about my condition, toconsider my options and the opinions ofothers, and to take charge of managing mydisease in the best possible way for me.’’

HCP’s Perspective

Dr. Kantor highlighted how clear, two-waycommunication is vital to foster successfulpartnerships between patients and HCPs,something that is also described in the literature[10, 11]. In a US survey of patients who pre-sented for the first time at an MS clinic between2003 and 2005, 82% of individuals performedweb-based searches in preparation for their ini-tial consultation. Hence, it was perhaps sur-prising that only 36% of those who hadgathered information before their first

appointment subsequently discussed it withtheir HCP [12]. This is especially surprisinggiven that patients within the 2011 NorthAmerican Research Committee on MultipleSclerosis (NARCOMS) registry indicated thattheir most trusted information source was anHCP, with 98% of patients reporting that theytrusted a physician ‘‘some’’ or ‘‘a lot’’ [13].

Dr. Kantor also noted how in recent years,the importance of shared decision-making inpatient–HCP communication has gainedincreasing recognition, particularly for chronicdiseases such as MS for which the treatments arenot curative. Indeed, a German study foundthat between 2001 and 2007, 80% of patientswith MS demanded autonomous roles in deci-sions relating to their treatment [14]. Given thatuse of social media has almost certainly led to apatient population that is well informed aboutcurrent treatment options, it would be reason-able to expect that this has resulted in patientschallenging their HCP’s prescribing recom-mendations more often and further influencingtheir practice patterns. Published evidenceexamining the effects that social media mayhave had on the shared decision-making pro-cess is scant, but this is an area where moreresearch would be valuable.

Although HCPs generally welcome a well-informed patient base, given that a betterunderstanding of treatment may lead to greateradherence and patient engagement, Dr. Kantoracknowledged that some HCPs may feel defen-sive when patients challenge their medicalknowledge or recommendations. He explainedthat although modern medicine is much lesspaternalistic than it was several decades ago, theexpectation that HCPs’ authority should berespected (if not revered) still lingers in somequarters.

Attempts have been made in the literature toquantify the influence of social media on thepatient–HCP relationship, albeit not specificallyrelating to MS. In a multidisciplinary survey of232 Brazilian HCPs carried out in 2011–2012,57% thought use of the Internet helped thepatient–HCP relationship, but 28% thought itinterfered with it, and 16% felt it had a negativeimpact [15]. A small qualitative multidisci-plinary survey of German HCPs, patients, and a

40 Neurol Ther (2018) 7:37–49

patient organization representative publishedin 2012 largely echoed these findings. Mostpatients from Germany continued to regardtheir HCP as the expert, but being a better-informed patient made the relationship withtheir HCP more balanced, with patientsbecoming more critical and interrogating rec-ommendations made by their HCPs [16]. NoGerman HCP reported feeling threatened orundermined by this shift in the relationship,but some noted that consultations could beprolonged when patients attended their con-sultation ready-armed with a self-diagnosisbased on Internet research [16].

However, findings from UK and US articleshave shown that with HCPs becoming increas-ingly burdened by non-face-to-face commit-ments (such as inordinate time spent obtainingprior authorizations), a more engaged and self-educated (social media-educated) patient basehas the potential to help improve the efficiencyof the delivery of care [4, 17, 18], perhaps byenabling patients to ask more informed ques-tions about their disease, thus saving some ofthe time that HCPs need to commit to educat-ing patients about their disease process andtreatment options.

PROMOTING AND FOSTERINGMULTIPLE SCLEROSIS RESEARCH

Patient’s Perspective

Before the availability of the Internet, and evenuntil quite recently, patients would probablyhave learnt about a trial of a new drug fromnewsletters (as Jeri did in 2006–2007), or fromtheir HCP.

‘‘I was still learning about MS from offlinesources at this time and when I received aMOMENTUM magazine from the NationalMS Society talking about a new pill form oftreatment still in clinical trials andrecruiting, I decided to ask my new doctorabout it. My new neurologist was Dr.Daniel Kantor who, at the time, was leadinvestigator for the TRANSFORMS trial atthe University of Florida. At my first

appointment we discussed the pros andcons of being in a study, and we weighedthe options.’’

‘‘So I took the informed consent home toread, and share with friends and family toget opinions on whether or not I shouldjoin.’’

‘‘I also tried to find anything online from apatient perspective about participating in aclinical trial. All I could find was from theresearch side.’’

Jeri took the decision, which was at the timeunusual, to blog her experience of participatingin this trial.

‘‘My blog would come to be widely accep-ted as the first start-to-finish blog of aclinical trial from a patient perspective. Apharmaceutical executive once dubbed methe ‘godmother of the intersection of socialmedia and research’.’’

US-based social media and websites (e.g.,PatientsLikeMe) are now widely used bypatients with MS not only to find informationon clinical trials, such as how to participate inthem and study results, but also to communi-cate their on-trial experiences [19–22]. Further-more, this avenue of communication affordspatients the opportunity to provide input ontrial design. Indeed, this is also something Jerihas been actively involved in.

‘‘Currently I work for HealthiVibe, LLC, acompany focused on bringing the patientperspective to clinical trial design andpatient-facing initiatives so our pharma-ceutical clients can design studies andprograms that are more meaningful andpatient-friendly.’’

Concerns have been raised in the literaturethat large numbers of patients interacting viasocial media during a clinical trial could havethe unwanted consequence of breaking theblinding of a study [20]. Again, this was some-thing that Jeri identified with and had alsoexperienced directly.

‘‘The question of possible unblinding dueto patients finding each other via social

Neurol Ther (2018) 7:37–49 41

media has become a real issue. A few of uswho remained in contact did reach out toeach other once we’d been unblinded tosee if the others knew. We were all correctin our suspicions. But we all agreed thatregardless of having found each other, it’sonly natural to wonder which arm you arein and to guess—whether silently to your-self, or out loud to family, friends, or thoseon social media. Together with a handfulof blog followers who had joined the clin-ical trial, I created a Yahoo! group to have amore private place for us to gather andcommiserate. In order to gain access,members had to prove they were in thetrial by sending me a photo of their medi-cation bottle. While some people did wantto talk about possible side effects and try tofigure out if they were on the real drug ornot, mostly we talked about normal thingslike family and jobs.’’

HCP’s Perspective

There are several published examples of thesuccessful use of social media to recruit partici-pants to MS studies, including a US trial exam-ining the adverse effects of switching treatmentand a large Australian study assessing factorsthat may contribute to fatigue [20, 21, 23]. In2012, the US Food and Drug Administrationalso approved a ‘‘crowdsourced’’ protocol for anMS trial that was developed with an onlinecommunity of patients, HCPs, and researchers[22]. Dr. Kantor also noted that in addition topharmaceutical company and MS patientadvocacy websites that act as gateways to clini-cal trials, patients with MS write blogs that offeradvice on accessing clinical trials, and MScommunity websites promote participation instudies (e.g., http://partnersinresearch.org,http://mymsteam.com) and encourage partici-pants to share their research experience (http://projectdreamnow.org, http://patientslikeme.com). Indeed, in 2009 an online communityof US patients with MS was used to develop aself-report questionnaire in order to quantifyadherence and to identify any barriers toachieving adherence that are specific to MS

disease-modifying treatments [24]. Social mediacould also be used by patients for real-timereporting of adverse events [25].

SHARING EXPERIENCESAND INTERPERSONAL CONTACT

Patient’s Perspective

Jeri was a frequent user of online forums, and astime progressed, she began to build up her ownnetwork of trusted members and online sources.

‘‘After posting on forums for a while, Ibegan to privately message other membersand online relationships—some of whichcontinue to this day—began. It was in thisway that we developed a network of trus-ted sources within the larger MS forums,and we would share links to information,or other forums.’’

It is evident that social media provides aninvaluable channel of communication andinteraction for people with disabilities [26] andhas the potential to relieve social isolation andimprove quality of life by connecting patientsto the wider world. For example, among indi-viduals in the 2011 NARCOMS registry, 61%used the Internet for social networking [13]. TheMultiple Sclerosis International Foundation(MSIF) 2014 global survey examining technol-ogy use and MS also revealed that social mediawas used for peer support and for building anMS community, with more than one-third(38%) keeping in touch with other people withMS [27]. Jeri found the ‘‘connecting’’ aspects ofsocial media particularly valuable, and rela-tionships within her network strengthened as adirect result of being able to connect with eachother instantly.

‘‘During the time I was blogging, I had myposts set up to automatically show up onFacebook and Twitter. Although I had usedFacebook to some degree, I had never usedTwitter very much.’’

‘‘When I got a smartphone in 2011, how-ever, I became even more involved insocial media. The apps for Facebook,

42 Neurol Ther (2018) 7:37–49

Twitter, and LinkedIn allowed me to con-nect to others even when I wasn’t at mycomputer, which resulted in a much dee-per, richer social media experience. I couldshare with others instantly instead ofwaiting to blog once I got home.’’

‘‘Because I had cultivated a group of friendswhose opinions I trusted, the feedback wasmeaningful and almost always instant.’’

Examples of the kinds of social networks thathave been developed for patients with MSinclude http://mymsteam.com. This US forumwas set up specifically to allow patients to talkto each other about the day-to-day realities ofliving with MS, sharing practical tips and per-sonal experiences, as well as providing supportand advice to each other on issues that can onlybe answered by someone living with the con-dition [28]. During a presentation at the 2015conference of the European Committee forResearch and Treatment in Multiple Sclerosis, itwas noted how sharing experiences on socialmedia helps patients feel less alone, giving themhope and providing an opportunity to talkabout things they felt were too embarrassing orstressful to share with close friends and family(e.g., issues with incontinence) [29]. The Inter-net also provides opportunities to explorepatients’ experiences of living with MS and ofdifferent treatment options, such as those in theMS in America study, as reported on the http://MultipleSclerosis.net website [30].

Social media has also transformed howpatients and HCPs communicate with eachother, especially in regions that have highlydeveloped healthcare systems, such as Canada,Europe, Israel, and the USA. Traditionally,HCPs and patients with MS in these regionshave communicated and exchanged informa-tion via face-to-face contact during clinic visitsas part of routine follow-up. However, as moreand more patients use computers and mobileelectronic devices to access health-relatedinformation, they are also becoming moreinterested in using digital technologies tocomplement face-to-face communicationswith their HCPs [31, 32].

HCP’s Perspective

Rather than being spectators to their patients’use of health-related information on the Inter-net and social media, Dr. Kantor outlined howHCPs have become involved in actively usingthese channels (a number of reasons that mightmotivate HCPs to have a social-media presenceare summarized in Table 1) [33]. Studies haveshown that social networks afford HCPs theopportunity to communicate with onlinepatient communities, and share health mes-sages that are likely to resonate with patientsand be adopted by them [6], while simultane-ously responding to their requests for accessible,interactive, two-way communication [34]. Evi-dence suggests that social media may alsoimprove patient outcomes and reduce health-care resource use [35]. Indeed, data from a 2015systematic review and meta-analysis found thatsocial networking site interventions in Aus-tralia, the UK, and the USA had a statisticallysignificant positive effect on the promotion ofhealth-related behavioral change [36].

Indeed, US HCPs may use social media, suchas Twitter and Facebook, for the purposes ofenhancing communication with their patientsand the wider healthcare community, includingproviding patient education and disseminatingpublic health information [37]. Across regions,the most widely used channels tend to be onlinecommunities that allow for catching up on thelatest news and developments, and networkingand communicating with colleagues on patientissues [5, 38]. With this in mind, MS HCPs couldset up a Facebook page or Google? circle specif-ically to distribute disease-based information and

Table 1 Reasons why physicians use social media [33]

To connect To be challenged

To engage To be supported

To inform To lead

To reflect To learn

To share To inspire

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guidance to patients, and to provide links to siteswith other relevant information [4, 37]. Suchplatforms also provide an opportunity to postvideos and newsletters and to conduct web-basedseminars [6]. Institutions can play a valuable rolein using social media as a vehicle for patienteducation, but as described in the accompanyingarticle on patient education, institutional use ofsocial media is not always directed in this way noris it always managed by individuals with knowl-edge of patient needs in MS.

In termsof patient–HCP interaction,Dr.Kantorexplained that there is a need to consider the dif-ferencesbetweenusingsocialmedia todisseminateinformation to large groupsof patients andusing itto interact directly with an individual patient.Evidence suggests that the communicationoptions offered by social media may help to pro-mote efficient use of resources and staff time [4].However, despite a rapid increase in its use, manyHCPsare reluctant to incorporate socialmedia intoroutine clinical practice owing to uncertainty sur-rounding ethical and legal obligations, publicaccess [2, 3], data security, and privacy regulations(e.g., the Health Insurance Portability andAccountability Act),managing the expectations ofsocial media-savvy patients, and the lack of reim-bursement for time spent. Indeed, results from asurvey of Australian HCPs published in 2015revealed that 66% of respondents were hesitant toengage fully in communications with patients viasocial media [3]. Notably, 19–35% of US and Aus-tralian HCPs have received a ‘‘friend’’ request froma patient via a social networking site, although fewrespond [2, 3]. Few of the US HCPs reported send-inga ‘‘friend’’ request toapatientor familymember(1–5%) [2], although in a separate US study, someHCPs reported making a conscious decision to‘‘friend’’ or connect with patients on social net-works in anattempt to encourage engagement andto appear approachable [39].

PRIVACY, CONFIDENTIALITY,AND ETHICAL CONSIDERATIONS

Patient’s Perspective

Maintaining patient confidentiality and privacyis an important issue when considering social

media in healthcare settings [40], and this mayinfluence how patients engage with and benefitfrom social media. This was a particular concernfor Jeri.

‘‘With more and more platforms becomingavailable for patients to connect, I believesecurity and privacy are being betteraddressed.’’

‘‘The privacy of Facebook groups was hardto understand for some at first. When theirposts would appear in their own Newsfeedoutside of the group, people becamealarmed and raised the question of privacywith the group admins [administrators]. Ibelieve nowadays Facebook users have abetter understanding of how privacy workswithin groups. That’s not to say therearen’t strong suspicions among patientmembers of these groups that there are‘plants’ who are members of pharmaceuti-cal companies trying either to learn aboutthe purpose of any given group, or to cor-rect misinformation about their product,or even to speak badly of a competitor’sdrug. The group admins try to stay on topof these types of accounts, researchingother activity to gauge whether or not theaccount is that of a real patient.’’

HCP’s Perspective

Social media raises privacy issues for HCPs aswell as for patients [40]. As with all patient–HCPcontact, patient confidentiality is paramountboth ethically and legally (e.g., policies forsecuring the privacy of individually identifiablehealth information are enshrined in the USHealth Insurance Portability and AccountabilityAct) [41], and confidentiality breaches can ariseif fragments of information can be assembledfrom different sources. It is important toremember that certain information can beaccessed freely by everyone online; therefore,prudence dictates that the most secure privacysettings should be selected when communicat-ing with patients and that these settings areupdated regularly [4, 42, 43]. Although socialmedia provides a platform that could

44 Neurol Ther (2018) 7:37–49

dramatically change the way that HCPs engagewith patients, the boundary between HCPs’private and professional lives can become blur-red when using social media [44]. In the UK andUSA, guidelines exist to help HCPs to optimizetheir use of social media, while ensuring thatprofessional and legal obligations are met andthat patients receive appropriate protection[42, 43, 45]. Dr. Kantor noted that these guide-lines highlight the need to maintain profes-sionalism, patient confidentiality, andappropriate patient–HCP relationships, as wellas to be aware of legal issues (e.g., defamation,as will be discussed) and conflicts of interest(Table 2). He also pointed out that it is essentialto apply the same medical values and principlesduring online interactions as when meeting a

patient face-to-face. Although HCPs should becompassionate and engage with patients, it isimperative to maintain professional boundaries.

The UK and US guidelines recommend thatHCPs should not accept ‘‘friend’’ requests;however, the advice is inconsistent [42, 43, 45].In addition, defamation law applies to interac-tions via social media, so derogatory or personalcomments should be avoided [42, 43]. It is alsoimportant that HCPs are mindful of their onlineimage and how it might reflect on them pro-fessionally: social media activity is often moni-tored by others, including the press, especiallyin public forums and on micro-blogging sitessuch as Twitter [42, 43]. Although social mediaprovides the opportunity to share expertise andinformation, caution should be exercised whenproviding personal advice online [43], andresponding to questions sent via social mediacould expose HCPs to legal action [6]. It is alsoimportant to consider that users with limitedsocial media experience are more likely to makemistakes than those accustomed to using it.Such mistakes could have severe consequencesif patient privacy is unwittingly breached [46].

FUTURE POTENTIAL OF SOCIALMEDIA

Social media is helping patients with MS tobecome more informed about their diagnosis,and thus it is encouraging them to take greaterresponsibility for their own health care. These‘‘e-patients’’ are individuals who are equipped,enabled, empowered, and engaged in their ownhealth and healthcare decisions [8]. They arechanging the relationships among HCPs andpatients and demanding a more equal partner-ship, with shared decision-making and respon-sibility. Social media will continue to drive thecooperative approach of participatory medicine,with patients actively participating alongsideHCPs in all aspects of their own health care,with the ultimate aim of improving outcomesand patient satisfaction [8]. In the future,interfacing with electronic medical records andmonitoring disease management in real timewill be made possible using mobile electronicdevices and the Internet. The role of social

Table 2 Steps healthcare professionals can take to avoidsome pitfalls of using social media [42–45]

Area Suggested actions

Professionalism Apply medical ethical values and

principles at all times

Protect your online image

Be polite and respectful

Be aware that social media can be

monitored by others

Avoid defamatory comments

Disclose any conflicts of interest

Patient

confidentiality

Patient confidentiality is an ethical and

legal obligation

Limit access to online content

Use the most stringent privacy settings

available

Be careful giving individual patients

medical advice online

Patient–HCP

relationship

Maintain professional boundaries

Avoid engaging in non-professional

relationships

Be cautious of accepting ‘‘friend’’

requests

HCP healthcare professional

Neurol Ther (2018) 7:37–49 45

media in these developments is unclear. Cur-rent guidelines recommend that social media isnot used for providing medical advice to indi-vidual patients, so wholesale replacement ofdirect patient–HCP interaction seems unlikely.

FINAL THOUGHTS: ‘‘HOW SOCIALMEDIA HAS CHANGED ME ASA PATIENT’’

Access to the Internet and interaction via socialmedia has broadened horizons for patients,empowering them not only in managing theirown treatment but also in helping and sup-porting others, and in contributing moreactively to medical research. This is a sentimentechoed by Jeri.

‘‘The Internet empowered me as a patientto become informed about my condition,to consider my options and the opinions ofothers, and to take charge of managing mydisease in the best possible way for me. Irealize everyone’s experience with MS andmedications is different, but the Internethas been the single most powerful influ-ence in my arsenal of tools to combat thisdisease.’’

‘‘I use social media to meet others with MS,and to find ways to make a difference andhave a positive impact. Staying connectedin this way has given me hope for thefuture and has given my life purpose. It hasmade having MS be more of a conduit andless of a burden. Without the Internet andsocial media I am convinced I would beisolated, introverted, and miserable.’’

CONCLUSIONS

As identified by Jeri and Dr. Kantor, and acrossdifferent countries in the supporting literature,a wide range of benefits for MS participatorymedicine can be gained from the targeted use ofthe Internet and social media. The rise of thee-patient—an informed and empowered indi-vidual who is actively involved in their ownhealthcare management—is challenging the

traditionally passive role that patients used toplay. This change in behavior has made theHCP–patient relationship more of an equalpartnership, with decision-making and respon-sibilities now shared between both parties. Useof these platforms also has potential to changedramatically the way HCPs engage with theirpatients and peers. However, there are a numberof important privacy, confidentiality, and ethi-cal issues that must be considered, which maylimit certain use of these platforms, especiallyby HCPs. Also, to maximize adoption bypatients and HCPs, it will be important toensure that these technologies are accessible,cheap, and quick and easy to use.

ACKNOWLEDGEMENTS

Editorial and medical writing support of themanuscript and the journal’s article processingcharges were funded by Novartis Pharmaceuti-cals Corporation. The authors acknowledge IanWilliams of Oxford PharmaGenesis Ltd (Oxford,UK), who provided editorial and medical writ-ing support, and Kathleen Hawker, formerly ofNovartis Pharmaceuticals Corporation (EastHanover, NJ, USA), who reviewed the articleduring the early stages of its development andconducted the interview with Jeri Burtchell. Inaddition, Novartis reviewed the final draft of themanuscript for scientific accuracy only. Allnamed authors meet the International Com-mittee of Medical Journal Editors (ICMJE) cri-teria for authorship for this manuscript, takecomplete responsibility for the integrity of thework as a whole, and have given final approvalfor the version to be published.

Disclosures. Daniel Kantor has receivedresearch support from Novartis and speak-ing/consulting honoraria, not related to thispublication. Jeremy R. Bright is an employee ofOxford PharmaGenesis Ltd. Jeri Burtchell hasacted as a consultant for Janssen, Lilly, Louisi-ana Public Health Institute, Novartis, RutgersUniversity, and Vanderbilt University, and hasreceived fees for speaking from ERT, Janssen,Lilly, and Novartis. She is the founder of

46 Neurol Ther (2018) 7:37–49

Partners in Research and Director of Healthi-Vibe, LLC. As an employee of HealthiVibe, LLC,she has worked on projects with many phar-maceutical companies, including Novartis. Shealso serves on the patient advisory boards ofCureClick and MS SoftServe, Inc.

Compliance with Ethics Guidelines. Thisarticle does not contain any new studies withhuman or animal subjects performed by any ofthe authors.

Data Availability. Data sharing is notapplicable to this article as no datasets weregenerated or analyzed during the current study.

Open Access. This article is distributedunder the terms of the Creative CommonsAttribution-NonCommercial 4.0 InternationalLicense (http://creativecommons.org/licenses/by-nc/4.0/), which permits any noncommer-cial use, distribution, and reproduction in anymedium, provided you give appropriate creditto the original author(s) and the source, providea link to the Creative Commons license, andindicate if changes were made.

REFERENCES

1. Bayer HealthCare Pharmaceuticals, Microsoft,National Multiple Sclerosis Society. New surveyfinds technology plays a critical role in the lives ofpeople with multiple sclerosis yet many are notusing it to overcome disease-related challenges.http://multivu.prnewswire.com/mnr/bayer/30325/.Accessed 31 July 2017.

2. Bosslet GT, Torke AM, Hickman SE, Terry CL, HelftPR. The patient–doctor relationship and onlinesocial networks: results of a national survey. J GenIntern Med. 2011;26:1168–74.

3. Brown J, Ryan C, Harris A. How doctors view anduse social media: a national survey. J Med InternetRes. 2014;16:e267.

4. George DR, Rovniak LS, Kraschnewski JL. Dangersand opportunities for social media in medicine.Clin Obstet Gynecol. 2013;56:453–62.

5. Househ M. The use of social media in healthcare:organizational, clinical, and patient perspectives.Stud Health Technol Inform. 2013;183:244–8.

6. Ventola CL. Social media and health care profes-sionals: benefits, risks, and best practices. PharmTher. 2014;39:491–520.

7. Society for Participatory Medicine. E-patients.net(blog). Guest post by Hugo Campos: a case forautonomy and the end of participatory medicine.http://e-patients.net/archives/2014/12/a-case-for-autonomy-and-the-end-of-participatory-medicine.html. Accessed 31 July 2017.

8. Society for Participatory Medicine. E-patients.net(blog). http://e-patients.net/about-e-patientsnet.Accessed 31 July 2017.

9. deBronkart D. From patient centred to peoplepowered: autonomy on the rise. BMJ.2015;350:h148.

10. Townsend A, Leese J, Adam P, et al. eHealth, par-ticipatory medicine, and ethical care: a focus groupstudy of patients’ and health care providers’ use ofhealth-related internet information. J Med InternetRes. 2015;17:e155.

11. Society for Participatory Medicine. E-patients.net(blog). Guest post by Mary Beth Schoening: a defi-nition of the engaged patient. http://e-patients.net/archives/2015/09/guest-post-by-mary-beth-schoening-a-definition-of-the-engaged-patient.html. Accessed 31July 2017.

12. Hay MC, Strathmann C, Lieber E, Wick K, Giesser B.Why patients go online: multiple sclerosis, theinternet, and physician-patient communication.Neurologist. 2008;14:374–81.

13. Marrie RA, Salter AR, Tyry T, Fox RJ, Cutter GR.Preferred sources of health information in personswith multiple sclerosis: degree of trust and infor-mation sought. J Med Internet Res. 2013;15:e67.

14. Heesen C, Kopke S, Richter T, Kasper J. Shareddecision making and self-management in multiplesclerosis—a consequence of evidence. J Neurol.2007;254(Suppl 2):II116–21.

15. de Oliveira JF. The effect of the internet on thepatient–doctor relationship in a hospital in the cityof Sao Paulo. J Inf Syst Technol Manag.2014;11:327–44.

16. Christmann S. The impact of online health infor-mation on the doctor–patient relationship—find-ings from a qualitative study. In: Cammaerts B,Anstead N, editors. MEDIA@LSE Electronic MScDissertation Series. London: Media@LSE; 2012.p. 1–39.

17. Powell JA, Darvell M, Gray JA. The doctor, thepatient and the world-wide web: how the internet ischanging healthcare. J R Soc Med. 2003;96:74–6.

Neurol Ther (2018) 7:37–49 47

18. Royal College of General Practitioners. Social mediahighway code. http://www.rcgp.org.uk/*/media/files/policy/a-z-policy/rcgp-social-media-highway-code.ashx. Accessed 30 July 2017.

19. PatientsLikeMe Newsroom. PatientsLikeMe studymonitors walking activity in people with MS. 2017.http://news.patientslikeme.com/press-release/patientslikeme-study-monitors-walking-activity-people-ms.Accessed 31 July 2017.

20. Lipset CH. Engage with research participants aboutsocial media. Nat Med. 2014;20:231.

21. Rosenberg R. Biogen Idec turns to MyHealthTeamin successful test of social networks for enrolling MSclinical trial. http://www.myhealthteams.com/wp-content/uploads/2015/01/cww1827_myHealthTeams.pdf. Accessed 31 July 2017.

22. Mansell P. Lisinopril IND is crowdsourcing first,says Transparency Life Sciences. http://www.pharmatimes.com/news/lisinopril_ind_is_crowdsourcing_first%2C_says_transparency_life_sciences_975991.Accessed 05 Oct 2017.

23. Weiland TJ, Jelinek GA, Marck CH, et al. Clinicallysignificant fatigue: prevalence and associated fac-tors in an international sample of adults withmultiple sclerosis recruited via the internet. PLoSOne. 2015;10:e0115541.

24. Wicks P, Massagli M, Kulkarni A, Dastani H. Use ofan online community to develop patient-reportedoutcome instruments: the Multiple Sclerosis Treat-ment Adherence Questionnaire (MS-TAQ). J MedInternet Res. 2011;13:e12.

25. IMS Institute for Healthcare Informatics. Engagingpatients through social media. http://www.imshealth.com/en/thought-leadership/ims-institute/reports/engaging-patients-through-social-media. Accessed31 July 2017.

26. Lejbkowicz I, Paperna T, Stein N, Dishon S, Miller A.Internet usage by patients with multiple sclerosis:implications to participatory medicine and person-alized healthcare. Mult Scler Int. 2010;2010:640749.

27. Multiple Sclerosis International Federation. MS infocus. Information, technology and MS. 2014.http://www.msif.org/wp-content/uploads/2014/09/MS-in-focus-23-Information-and-communication-English.pdf. Accessed 31 July 2017.

28. MYMSTeam. https://www.mymsteam.com/. Acces-sed 31 July 2017.

29. MS Connection blog. How people with multiplesclerosis use social media. https://www.msconnection.org/Blog/October-2015/How-People-with-Multiple-Sclerosis-Use-Social-Medi. Accessed 31 July 2017.

30. MultipleSclerosis.net. MS in America study. 2017.https://multiplesclerosis.net/ms-in-america-2014/.Accessed 31 July 2017.

31. Gagnon MP, Ngangue P, Payne-Gagnon J, Desmar-tis M. m-Health adoption by healthcare profes-sionals: a systematic review. J Am Med InformAssoc. 2015;23:212–20.

32. Weiner JP. Doctor–patient communication in thee-health era. Isr J Health Policy Res. 2012;1:33.

33. Cunningham AM. Physicians: top ten reasons forsocial media use in Social media: the way forward ora waste of time for physicians? by M DeCamp andAM Cunningham. J R Coll Phys Edinb.2013;43:318–22.

34. Gagnon K, Sabus C. Professionalism in a digital age:opportunities and considerations for using socialmedia in health care. Phys Ther. 2015;95:406–14.

35. George DR. Making ‘‘social’’ safer: are Facebook andother online networks becoming less hazardous forhealth professionals? J Clin Ethics. 2012;23:348–52.

36. Laranjo L, Arguel A, Neves AL, et al. The influenceof social networking sites on health behaviorchange: a systematic review and meta-analysis.J Am Med Inform Assoc. 2015;22:243–56.

37. Kantor D. Social networking: who are your friends?Northeast Florida Med J. 2011;62:27–30.

38. Chauhan B, George R, Coffin J. Social media andyou: what every physician needs to know. J MedPract Manag. 2012;28:206–9.

39. Chretien KC, Kind T. Social media and clinical care:ethical, professional, and social implications. Cir-culation. 2013;127:1413–21.

40. Denecke K, Bamidis P, Bond C, et al. Ethical issuesof social media usage in healthcare. Yearb MedInform. 2015;10:137–47.

41. US Department of Health and Human Services.Health information privacy. http://www.hhs.gov/ocr/privacy/hipaa/understanding/. Accessed 31 July2017.

42. British Medical Association. Using social media:practical and ethical guidance for doctors andmedical students. http://bma.org.uk/practical-support-at-work/ethics/medical-students-ethics-tool-kit/students-and-social-media. Accessed 31 July 2017.

43. Royal College of General Practitioners. Social mediahighway code. 2013. http://www.rcgp.org.uk/*/media/files/policy/a-z-policy/rcgp-social-media-highway-code.ashx. Accessed 31 July 2017.

48 Neurol Ther (2018) 7:37–49

44. Budd L. Physician tweet thyself: a guide for inte-grating social media into medical practice. B C MedJ. 2013;55:38–40.

45. AMA. The AMA code of medical ethics’ opinions onobserving professional boundaries and meetingprofessional responsibilities. Opinion 9.124—pro-fessionalism in the use of social media. http://

journalofethics.ama-assn.org/2015/05/coet1-1505.html. Accessed 31 July 2017.

46. DeCamp M. Physicians on social media: too riskyfor most? in Social media: the way forward or awaste of time for physicians? by M DeCamp andAM Cunningham. J R Coll Phys Edinb.2013;43:318–22.

Neurol Ther (2018) 7:37–49 49