Perspectives from the Patient and the Healthcare Professional in Multiple Sclerosis: Social Media and Patient Education

Perspectives from the Patient and the Healthcare Professional in Multiple Sclerosis: Social Media... perspective is provided by Jeri Burtchell, a clin- ical trials awareness activist, MS patient advo- Compliance with Ethics Guidelines cate, founder of Partners in Research, and Director of Patient Initiatives at HealthiVibe, This article does not contain any new studies LLC. These perspectives are drawn together in with human or animal subjects performed by the context of published research by Jeremy any of the authors. Bright, a medical writer at Oxford Neurol Ther (2018) 7:23–36 25 present physician and patient perspectives on LIVING WITH MULTIPLE SCLEROSIS each of these themes and contextualize them in terms of the available literature. A further sec- In coping with their disease, individuals with tion outlines general use of the Internet and MS may face many challenges, including social media, including by patients with MS. changes in physical ability, cognition, employ- ment status, and effects on their mental health and well-being. Without treatment, patients MULTIPLE SCLEROSIS BEFORE with MS accumulate moderate levels of disabil- THE ADVENT OF THE INTERNET ity (Disability Status Scale [DSS] score of 3) on AND SOCIAL MEDIA average within 8 years of diagnosis, and need assistance with walking (DSS score of 6) within Patient’s Perspective 9–15 years of diagnosis [4]. In addition, 40–65% of patients with MS have some degree of cog- nitive impairment, primarily involving learn- Jeri was diagnosed with MS in 1999, 3 months ing, memory, and attention, as well as executive after the onset of symptoms. functions such as organization, decision-mak- ‘‘I awoke one morning in January 1999 and ing, and problem-solving [5, 6]. A cross-sec- my left foot was numb. I shrugged it off, tional study of European patients with MS thinking it was asleep, but it never woke conducted in 2005 revealed unemployment back up again, and within 2 weeks the rates of between 60% and 75% [7], and a Danish numbness had spread from my left foot to retrospective study published in 2009 found my right and worked its way up to my that retirement occurred about 14 years earlier waist. During that time I was getting pro- among patients with MS than among matched gressively weaker until every step I took felt control individuals [8]. Compared with the like I was forcing my way through mud.’’ general population, lifetime prevalence for a variety of psychiatric disorders, including major Patients’ experiences of receiving a diagnosis depressive disorder, is elevated among individ- of MS vary a great deal, and although these uals with MS, and suicide may be at least twice experiences seem to have improved recently, as common [9]. The factors contributing to the poor levels of support and information were still development of depression in MS are complex. being reported in 2007 [12]. Jeri received nei- However, lower educational level, greater dis- ther appropriate support nor helpful informa- ability severity, being retired owing to MS or tion following her diagnosis. being unemployed, having progressive-relaps- ‘‘I received no information about MS and ing MS (now termed primary progressive MS was sent home to await a visit from an in- with activity), one or more comorbidities, and home nurse who would teach me how to clinically significant fatigue are all associated inject myself. The medication came with a with increased risk of depression, as are a hotline number to reach a nurse if I had any number of modifiable lifestyle factors [10]. Fur- questions about my medication. I called the thermore, a significant minority of patients regional chapter of the National MS Society with MS are confined to their homes [11]. to find out anything I could. They added me In considering the impact of the Internet to their mailing list and I began receiving and social media on patients with MS, Jeri and their newsletters and quarterly magazine. I Dr. Kantor’s perspectives can be grouped into was disappointed to learn there was no local four major themes: (1) managing MS before the support group in my area.’’ advent of the Internet and social media; (2) disease awareness in the age of social media; (3) The Internet was still in its infancy when Jeri treatment awareness in the age of social media; received her MS diagnosis, and she was frus- and (4) the quality of information available on trated by the difficulty of sourcing information social media. In the following sections we about the disease. 26 Neurol Ther (2018) 7:23–36 ‘‘My mother put me in touch with a former lifetime education through Continuing Medical co-worker who was diagnosed with MS Education courses, by reading journal articles 10 years prior. We had a long talk on the and textbooks, and by interacting with other phone, but her MS was completely differ- HCPs in settings both formal (such as confer- ent from mine. Although we shared a ences) and informal (such as hallway conversa- common disease, I felt like we were tions). It was extremely time consuming for a speaking two different languages.’’ patient to remain as updated as their HCP on ‘‘I visited the library to learn more, but recent advances. Interactions between HCPs none of the books they had on neurologi- and patients occurred only in face-to-face clin- cal conditions were recent. When I was ical office visits and in group settings, when an able to get to a larger town, I would seek HCP would address an MS support group. out a bookstore like Barnes & Noble to try and find more current literature about PATIENTS WITH MULTIPLE MS.’’ ‘‘Although the Internet was available at the SCLEROSIS, THE INTERNET, time, it was cost prohibitive and I didn’t AND SOCIAL MEDIA have a decent computer, anyhow.’’ When Internet search engines first became During this pre-Internet era, patients with widely available in the early 1990s, a search of physical and cognitive problems may have been the World Wide Web (Web) for ‘‘multiple scle- particularly disadvantaged by the limited ability rosis treatment’’ would probably have yielded to have clinic visits and to recall details about few or no results; whereas today, putting this their clinical encounters [13]. In terms of overall term into a search engine yields more than well-being, patients may also have been disad- 29 million results. As well as providing access to vantaged by the more limited opportunities for such a colossal repository of information, the social interaction that existed before the arrival Web is the conduit for social media activities of the Internet and social media. Patients with (ideas, group messages, personal messages, MS can become isolated, removed from society images, videos, etc.). Social media enable users [11] and the workplace [7], and can lose the to create and communicate information and to opportunity to engage in social interactions. participate in social and professional network- Indeed, Jeri encountered these issues as her MS ing [14, 15] and there is a long history of progressed. Experiencing three or four relapses patients turning to the Internet and online annually for the first 7 years, Jeri often had to communities for advice and support [16]. An use a walker or wheelchair for months at a time. early example is Bob Willmot’s ‘‘kneeboard’’, an ‘‘I felt isolated and closed in. The more my online forum created in 1996 specifically for disease robbed from me, the more intro- patients with knee injuries, allowing them to verted and depressed I became. I was forced discuss their injuries and recovery with others to close my print shop I’d had since 1990, [17]. With increasing access to the Internet, the due to my failing health. Interacting with number of these online communities has risen my customers had been my main source of rapidly. A Pew Research Center survey found social interaction, so when my business that 74% of adults in the USA who used the closed I became even more isolated.’’ Internet in 2014 participated in social media networks [18]. Slightly more women than men HCP’s Perspective were networking (76% vs 72%) [18] and online activity was related to age and income [19]. Facebook was the most popular site (71% of Dr. Kantor described how, before the advent of online adults); LinkedIn, Pinterest, Instagram, the Internet, medical knowledge was concen- and Twitter registered 23–28% usage (Table 1) trated among HCPs: they had undergone [18–24]. Globally, this equates to nearly advanced training and had continued their Neurol Ther (2018) 7:23–36 27 Table 1 Summary of survey data Table 1 continued Survey of online N Findings Survey of online N Findings activity activity General population Disease awareness among patients with MS Pew Research 5112 74% of US adults online NARCOMS 8586 79% searched for MS Center (2014) used social media (2011) [22] treatment, 63% for MS [18] 71% used Facebook; information, and 56% for 23–28% used LinkedIn, MS symptoms Pinterest, Instagram, or 55% searched for coping Twitter with MS and 26% for how Pew Research 5512 Internet usage was related to to pay for treatment Center (2014) age, educational 18% searched for how to [19] attainment, and obtain medical care household income 60% used the WWW as a Study in USA 2390 75% of the general public primary information (2006) [20] used the Internet source when they had last Patients with MS sought health information; only 15% used their HCP Study in 586 94% of patients with MS Study in USA 2390 53% of respondents Germany had access to the Internet (2009–2010) (2007) [20] indicated that the Internet Patients who used the [21] played a key role in Internet most frequently helping them to become were most likely to be their own MS advocate receptive to using new forms of electronic Global (65 879 56% of respondents communication with countries) (2014) indicated that they used HCPs [24] social media to monitor latest MS research NARCOMS 8586 86% of patients with MS (2011) [22] had accessed the Internet 47% used the WWW to or used e-mail research MS diagnosis and treatment More than 60% of these patients accessed the 39% used social media for Internet several times a day advice on specific MS topics Study in USA 2390 93% of respondents with (2006) [20] MS used the Internet HCP healthcare professional, MS multiple sclerosis, NARCOMS North American Research Committee on Study in UK 92% of patients with MS Multiple Sclerosis, WWW World Wide Web (2010) [23] reported that they used a Multiple Sclerosis Center Dresden (Dresden, Germany), the Internet C 3 times/ Multiple Sclerosis Center Stuttgart (Stuttgart, Germany), week and several neurological outpatient centers of Neu- roTransData GmbH (Neuburg, Germany) 28 Neurol Ther (2018) 7:23–36 1 billion daily users of Facebook and 328 mil- [30]. The relatively high use of the Internet by lion active monthly users of Twitter in 2017 patients with MS compared with the general [25, 26]. population, combined with the strong interest For patients with MS, social media may help of these individuals in using online portals and them to understand and manage both their other online technologies to source information disease and their treatment options. Consider- about their condition and to communicate with ing the online activities of patients with MS, a HCPs, suggests that patients with MS may be survey conducted from 2009 to 2010 in outpa- super-adopters of emerging e-health trends tient clinics in Germany [21], as well as a 2011 [31–33]. Indeed, receiving a diagnosis of MS had survey of 8586 patients with MS in the USA and a profound psychological effect on Jeri and she Canada (the North American Research Com- was keen to find out more. mittee on Multiple Sclerosis [NARCOMS] reg- ‘‘I remember being terrified and also in istry) [22], found that most patients (86–94%) deep denial. I didn’t even know what MS had access to the Internet or e-mail, and that was—I had it confused with muscular 60–71% accessed it at least once a day. Similarly, dystrophy.’’ a UK survey from 2010 reported that 92% of people with MS used the Internet three times or The Internet and online communities helped more per week [23], and a 2007 US survey of Jeri to source much-needed information about 2390 patients with MS reported Internet use by her condition and enabled her to connect and 93% of participants, compared with 75% of the share experiences with other patients with MS. general population [20]. Notably, the German ‘‘Sometime during 2002, 3 years after my survey found that patients who used electronic diagnosis, I got a new computer and con- media regularly were more likely to accept this nected to the Internet. I researched MS media type for communication with HCPs, online, but the Internet was so new that compared with patients who used electronic finding good sources of information was media infrequently [21]. not easy. I mostly learned through anec- dotes and conversations with other patients in online forums. I spoke to DISEASE AWARENESS IN THE AGE someone with MS who my mother knew OF SOCIAL MEDIA and, at my urging, she started a support group.’’ Patient’s Perspective ‘‘I had begun working part-time from home, so I honed my online skills in for- Newly diagnosed individuals can benefit from ums for online sellers, eventually ventur- the targeted provision of online information, ing out to other parts of the Internet to because it can improve their knowledge of MS seek information about my disease.’’ and satisfaction with their care [27]. As online When individuals in the 2011 NARCOMS content has accrued, patients with MS have registry were asked about the type of informa- increasingly used the Internet both to source tion sought online, 79% nominated treatment medical information and to communicate for MS and 63% nominated general information within the MS community [28, 29]. When asked about MS; symptoms of MS (56%) and coping about the most recent time that they sought with MS (55%) were also actively researched, as information, 60% of patients in the 2011 NAR- were paying for (26%) and exploring where to COMS registry cited the Internet as their first obtain (18%) medical care [22]. However, the source of information about MS (compared with most trusted information source was still an 15% seeking information from their HCP) [22]. HCP, with 98% of patients reporting that they Similarly, in 2014 it was estimated that 72% of trusted a physician somewhat or a lot [22]. In a US and European patients with MS found social separate survey of 879 patients from 65 coun- media and online resources most helpful for tries that was published in 2014, about half of obtaining information about their condition Neurol Ther (2018) 7:23–36 29 the participants used social media to monitor Table 2 Potential benefits of social media in health care [15, 42–44] the latest MS research (56%) and about half to gather information on diagnosis and treatment Improved physician–patient communication (47%); the most common sources of informa- tion were MS organization websites, followed by Increased patient motivation medical or scientific sites and HCPs (Table 1) Timely awareness of important issues [24]. In a 2007 survey of 2390 US patients with MS, 53% of respondents also revealed that Greater access to accurate health information Internet use had helped them to become their Engagement of a large number of patients own MS advocate [20]. Encouragement of debate and exchange of ideas In addition to individual HCPs using social media to educate and advocate for people with Improved patient access to health services and social MS, institutions have increasingly carved out a support presence in the social media sphere. While it Better outcomes seems that some institutional accounts are managed by individuals with little direct Behavioral change and better treatment knowledge of the needs of patients with MS, adherence/compliance others are managed either by HCPs affiliated Reduced healthcare resource usage and overall costs with the institution or by their delegates. However, Jeri does not recall having been Public health surveillance directed to websites or social media accounts by Better-informed treatment decisions any of the tertiary care centers with which she has been involved. By contrast, advocacy groups such as the National Multiple Sclerosis Society (http://www.nationalmssociety.org) and the are the abilities to promote health education Multiple Sclerosis Association of America and to improve health behavior and access to (mymsaa.org) do seem to have a strong online health services among large numbers of patients presence, and Jeri relies heavily on these sites [15, 41–44]. Indeed, providing patients who for information. have MS with appropriate information appears to increase their disease-related knowledge [45]. HCP’s Perspective Moreover, access to online information and engagement through social media may influ- As is evident in the literature [34], Dr. Kantor ence patients’ adherence to treatment and their noted that patients with MS are generally con- coping strategies, and lead to greater empow- sidered to be extremely well informed. How- erment and improved clinical outcomes ever, various studies have shown that their [21, 31, 46]. While the role of social media in information needs and Internet activities vary supporting patients tends to be positive, both according to individual characteristics, the patients and HCPs need to be aware of the length of time since diagnosis, and disease type, potential pitfalls (Table 3), such as identifying stage, and severity [34–38]. Low levels of health reliable and trustworthy sources of information literacy are linked to increased risk of adverse (discussed later), concerns about patient confi- health behaviors (e.g., smoking or being over- dentiality, and maintaining appropriate weight or obese) [39], increased healthcare uti- patient–HCP relationships (discussed in more lization (hospitalizations and emergency room detail in the accompanying ‘‘Participatory use) [39, 40], less participation in health pro- medicine’’ article). motion programs, poorer treatment adherence The findings of a US study from 2014 high- and patient outcomes, and worse overall health light the need for careful research to ensure that status [40]. Among the potential benefits of dissemination of information by any particular social media highlighted by Dr. Kantor (Table 2) channel is effective [47]. The study found that 30 Neurol Ther (2018) 7:23–36 Table 3 Potential pitfalls of social media in healthcare However, Dr. Kantor has noticed that the ways [13, 42–44, 54, 55] in which some institutions use social media resemble the manner of usage by individual Information may be incorrect, misleading, or lacking an HCPs; these cases are probably attributable to evidence base usage by an individual HCP employed by the institution. However, other institutions appear Inappropriate format, layout, contrast, and sizing can to use social media as a marketing tool to retain limit patient uptake current patients and to attract new ones. Confidentiality, privacy, and other ethical issues may arise TREATMENT AWARENESS Liability, professionalism, and legal concerns may deter IN THE AGE OF SOCIAL MEDIA physician uptake Patient–HCP boundaries could be violated Patient’s Perspective Platform use may affect HCP productivity Patients search for MS-related information online, including drug treatments and side effects, emerging research, new and alternative treatment options, and HCPs’ credentials HCP and patient awareness/knowledge of the [22, 24, 29, 31, 36, 49]. Jeri also used several American Academy of Neurology Clinical Prac- online resources to help address her concerns tice Guideline ‘‘Complementary and alternative about the potential side effects of medication medicine in multiple sclerosis’’ was not and to find information about switching increased by adding novel routes of dissemina- treatments. tion (e.g., Facebook, Twitter, YouTube, and LinkedIn) to more traditional routes (e.g., print, ‘‘I remember a specific incident when my e-mail, and Internet-based methods). Tradi- PCP [primary care provider] prescribed an tional dissemination may already have satu- antidepressant. I was afraid to take it rated the target audience, or social media may because I’d been reading about the side not have been the most appropriate channel for effects on the package insert. I searched on this type of information [47]. MSWorld [http://www.msworld.org/] for Dr. Kantor also noted that programs aimed at anything I could find about the medica- modifying health behaviors may be honed by tion. I also posted that I was about to start understanding patient concerns garnered from taking it and wondered about things like social networking sites. For example, in an dependency and mood changes. Almost Italian study conducted in 2011, patients with instantly others from around the world MS reported that they trusted social networks were commenting and sharing their expe- because they considered the users (i.e., fellow riences, giving me the feedback I needed to patients) to be independent of commercial or make my own decision.’’ other interests [28]. Social networks afford HCPs ‘‘I noticed people were also sharing about the opportunity to share reliable, high-quality how they were switching MS medications information, and to develop health messages when theirs ‘quit working’ for them. The that are more likely to resonate with and be next time I saw my neurologist I asked him adopted by patients [43], while simultaneously about switching.’’ responding to the demand by patients for an In the 2014 global MS survey, more than interactive communication that is easy to access one-third of respondents (39%) reported that [48]. they used social media to seek the opinions of There is little published information on the others on specific topics [24], which Jeri also similarities and differences between institu- noted. tional and individual HCP social media use. Neurol Ther (2018) 7:23–36 31 ‘‘I have noticed there is a trend in online PatientsLikeMe, have written extensively on use of social media among patients with topics ranging from the emotional and physical MS and other chronic conditions that they challenges of living with MS through to issues interact online when seeking advice about the pharmaceutical industry [50, 51]. because they’re having problems. Whether Twitter has also been used to investigate it is due to new symptoms and they want patients’ experiences with MS drug therapies to hear how others have dealt with them, [52]. Of a total of 60,037 tweets posted between or they think something might be an 2006 and 2014 that mentioned approved MS adverse event caused by their medication, treatments, almost half contained non-neutral online activity among a large portion of sentiments about treatment, although the most those with MS involves finding out what commonly tweeted words related to routes of others think about their current crisis administration and effects of treatment (in- situation.’’ cluding known side effects) [52]. Dr. Kantor also highlighted how patient In 2007, after deciding to enroll in a clinical experiences shared via social media are now trial, Jeri started a blog to document her expe- being used to answer specific questions relating rience from the patient’s perspective, and con- to MS outcomes. For example, content posted tinues to contribute regularly to online by US patients to Facebook, Twitter, blogs, and activities related to MS. Sharing the experiences online forums in 2013 and 2014 mentioning of other patients with MS can be empowering, specific oral, injectable, and intravenous MS giving individuals the confidence to discuss treatments was collected and analyzed to disease management options with their HCP. understand patients’ switching behaviors. ‘‘When patients talked about switching Compared with more traditional methods of medications often they just stated that research (e.g., retrospective analyses of claims their current medications were either ‘not databases), this approach provided novel working’ for them anymore, or they were insights into patients’ personal experiences of ‘fatigued’ by the side effects. Some even their treatments and common reasons for spoke of ‘drug holidays’ which intrigued switching treatments [53]. me.’’ Given that use of social media has almost ‘‘Delivery method seems to be a big con- certainly led to a patient population that is cern among those who are newly diag- better informed about current treatment nosed compared to those who lived options, Dr. Kantor believes it reasonable to through the era where your only choice expect that this has also led patients to chal- was injectable.’’ lenge their HCP’s prescribing recommendations ‘‘Most of these conversations come up more often, further influencing their practice when a doctor has said it was time to patterns. Patients offering guidance to each switch, and the patient is trying to research other can be beneficial to HCPs, because this their choices, or when a patient feels it’s reduces the time that HCPs need to commit to time to switch and wants to figure out educating patients about their disease process which drug to pitch to their doctor.’’ and treatment options, and time can be better spent making shared decisions on patient care. HCP’s Perspective QUALITY OF INFORMATION A major advantage of social media highlighted ON SOCIAL MEDIA by Dr. Kantor is the insight it offers into the real-world views held by patients regarding their Patient’s Perspective disease, its treatment, and their care. For example, patient bloggers such as Wheelchair A 2009 survey of Internet use among Israeli Kamikaze, and numerous contributors to patients with MS found that most believed that 32 Neurol Ther (2018) 7:23–36 information on the Internet was as trustworthy ‘‘Knowing who to trust on the Internet isn’t easy, even for people who think they as that in books [36]. By contrast, studies con- ducted in 2011 showed that North American have become savvy at discerning real information from a scam. When in doubt, [22] and Italian [28] patients had concerns about the quality and trustworthiness of infor- my best advice would be to speak to your mation online, and had difficulties in accessing doctor.’’ or understanding the information they wanted The reliability of information is clearly an [22, 28]. Jeri also raised this concern. important issue for many patients: in the Mul- ‘‘Finding a way to verify the factual infor- tiple Sclerosis International Foundation (MSIF) mation people were posting was nearly 2014 global survey examining information impossible. At first, I would take every- technology use and MS, one-third of patients thing everyone said as fact, or if they pro- with MS reported content with ‘a scientific or vided links to websites that purported to statistical basis’ to be the factor that most have the miracle cure, etc., I’d get excited increased the reliability of MS information; furthermore, some patients verified information and think maybe they were on to some- thing. This would lead to a cycle of getting independently using public databases such as PubMed [24]. Jeri also adopted an evidence- my hopes up, followed by having them dashed, and finally becoming jaded to based approach as her experience in seeking MS-related information increased. anything I read or heard. It would take a while before I would develop the Internet ‘‘Writing about MS led me to hone my savvy that helped me become a discerning, online research skills, diving deeper into scrutinizing consumer of the Internet.’’ using tools like Google Scholar and learn- ing how to avoid sources that may not However, over time, Jeri learned how to identify reliable sources of information. have the best information. I learned to trust sources that cited their own sources, ‘‘I learned to look for clues and to always began looking for the HON Code symbol question the motives or goals of whatever on sites, indicating they met the criteria for website I landed on. If they were promot- providing trustworthy health information ing a ‘cure all’ product, I knew they were as laid out by the Health on the Net only interested in sales. If articles were Foundation.’’ surrounded by ads for products that appeared to be ‘too good to be true’, I In the same MSIF leaflet that published these would back out. Over time, I began looking results, guidance was also provided for patients for validating sources to corroborate and HCPs on how to get the most from the whatever ‘facts’ were being presented. If Internet [24]. It includes a section on how to the sources included links to published, evaluate the trustworthiness of websites and highlights the importance of checking factors peer-reviewed white papers or study results, then I was more inclined to trust such as who is responsible for the website con- tent, and whether content seems reliable or is the content I was reading. But even then, I learned to delve further. If something was presented in an unbiased and easy-to-read for- mat [24]. written by a person with ‘PhD’ or ‘MD’ after their name, it didn’t necessarily mean that it was credible. If it was a topic I was HCP’s Perspective seriously interested in, perhaps something controversial like CCSVI [chronic cere- Among the potential benefits of social media brospinal venous insufficiency] for outlined by Dr. Kantor is the ability to rapidly instance, then I would research the disseminate accurate, evidence-based health- authors’ backgrounds as well to see what care information and educational resources to motivated them.’’ large numbers of patients and to counter Neurol Ther (2018) 7:23–36 33 inaccurate online material; this is supported by overseen by neurologists and psychologists findings from several recent studies [41–43]. Dr. experienced in MS, who intervene if any false Kantor also highlighted how, in the age of social or inappropriate medical information is posted media, face-to-face interactions remain impor- [57, 58]. Dr. Kantor recognizes how initiatives tant, and there may be a need to encourage such as these could help to counter the mass of patients to talk with their HCP about what they false, misleading, or unsubstantiated informa- have encountered online. Indeed, in a US sur- tion about MS that exists online, although vey of patients who presented for the first time there are time and cost implications associated at an MS clinic between 2003 and 2005, 82% of with such efforts. individuals with MS had performed web-based searches in preparation for an initial consulta- CONCLUSIONS tion, so it was perhaps surprising that only 36% of patients who gathered information before As identified by Jeri and Dr. Kantor, as well as their first appointment subsequently discussed across different countries in the supporting lit- it with their HCP [31]; this lack of clinical cor- erature, the rise of social media and the wide- roboration highlights the possible pitfalls of spread use of healthcare-related information on potentially unreliable ‘‘medical’’ information. the Internet in the MS patient community have Examples of such unreliable information have had a profound impact on the disease area. been highlighted in various studies, including Individuals with MS are now connected to each an expert analysis of 25 French-language Inter- other and to sources of information regarding net sites about MS [54]. All content (collected their condition more than ever before. This has on a single day in 2014) was deemed to be enabled patients to educate themselves about mediocre and poorly referenced, highlighting their condition, so that they are better informed the need for HCPs to provide patients with about MS and its treatment, and has empow- guidance on where to find reliable information ered them to take an active role in making online [54]. Access to poor-quality information decisions about their health care. Social media may be of particular concern when the content and the Internet have also allowed HCPs to relates to a proposed new treatment that lacks promote health education and to disseminate an evidence base, such as CCSVI. A 2016 anal- accurate medical information more easily, and ysis of all YouTube videos relating to CCSVI have enabled HCPs to steer patients towards posted between December 2009 and July 2011 unbiased peer-reviewed or society-endorsed found that most presented a positive or unbal- sources of information online. This is particu- anced view of the treatment, and did not larly important given the wealth of content that acknowledge the lack of supporting scientific is incorrect, misleading, or lacking an evidence evidence or the possible role of the placebo base. At the same time, HCPs have become effect [55]. more aware of the benefits that such platforms Web initiatives, such as the Integrating and can confer in terms of patient education. While Deriving Evidence, Experiences and Preferences HCPs are more aware than they have been his- (IN-DEEP) project, have been developed torically of the benefits in terms of patient specifically to counter such issues [56]. Estab- education that such platforms can confer, the lished as part of an Australian–Italian collabo- time needed to assimilate their use into routine ration, IN-DEEP aims to provide accessible and clinical practice may be a limiting factor. meaningful evidence-based information to Finally, even if the Internet and social media are patients with MS, relevant to situations that the sources that patients use most frequently to they might encounter in everyday life [56]. In research their condition, HCPs are still the most addition, an online community (http://www. trusted sources of healthcare information, and smsocialnetwork.com) was established in 2012 their contributions to online media are to allow Italian patients with MS to exchange invaluable. information based on sound medical and sci- entific evidence with each other. All content is 34 Neurol Ther (2018) 7:23–36 Attribution-NonCommercial 4.0 International ACKNOWLEDGEMENTS License (http://creativecommons.org/licenses/ by-nc/4.0/), which permits any noncommer- Editorial and medical writing support of the cial use, distribution, and reproduction in any manuscript and the journal’s article processing medium, provided you give appropriate credit charges were funded by Novartis Pharmaceuti- to the original author(s) and the source, provide cals Corporation. The authors acknowledge Ian a link to the Creative Commons license, and Williams of Oxford PharmaGenesis, Oxford, indicate if changes were made. UK, who provided editorial and medical writing support, and Kathleen Hawker, formerly of Novartis Pharmaceuticals Corporation (East Hanover, NJ, USA), who reviewed the article REFERENCES during the early stages of development and conducted the interview with Jeri Burtchell. In 1. Hakim EA, Bakheit AM, Bryant TN, et al. 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Professionalism in a digital age: opportunities and considerations for using social media in health care. Phys Ther. 2015;95:406–14. http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png Neurology and Therapy Springer Journals

Perspectives from the Patient and the Healthcare Professional in Multiple Sclerosis: Social Media and Patient Education

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Medicine & Public Health; Internal Medicine; Neurology
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Abstract

perspective is provided by Jeri Burtchell, a clin- ical trials awareness activist, MS patient advo- Compliance with Ethics Guidelines cate, founder of Partners in Research, and Director of Patient Initiatives at HealthiVibe, This article does not contain any new studies LLC. These perspectives are drawn together in with human or animal subjects performed by the context of published research by Jeremy any of the authors. Bright, a medical writer at Oxford Neurol Ther (2018) 7:23–36 25 present physician and patient perspectives on LIVING WITH MULTIPLE SCLEROSIS each of these themes and contextualize them in terms of the available literature. A further sec- In coping with their disease, individuals with tion outlines general use of the Internet and MS may face many challenges, including social media, including by patients with MS. changes in physical ability, cognition, employ- ment status, and effects on their mental health and well-being. Without treatment, patients MULTIPLE SCLEROSIS BEFORE with MS accumulate moderate levels of disabil- THE ADVENT OF THE INTERNET ity (Disability Status Scale [DSS] score of 3) on AND SOCIAL MEDIA average within 8 years of diagnosis, and need assistance with walking (DSS score of 6) within Patient’s Perspective 9–15 years of diagnosis [4]. In addition, 40–65% of patients with MS have some degree of cog- nitive impairment, primarily involving learn- Jeri was diagnosed with MS in 1999, 3 months ing, memory, and attention, as well as executive after the onset of symptoms. functions such as organization, decision-mak- ‘‘I awoke one morning in January 1999 and ing, and problem-solving [5, 6]. A cross-sec- my left foot was numb. I shrugged it off, tional study of European patients with MS thinking it was asleep, but it never woke conducted in 2005 revealed unemployment back up again, and within 2 weeks the rates of between 60% and 75% [7], and a Danish numbness had spread from my left foot to retrospective study published in 2009 found my right and worked its way up to my that retirement occurred about 14 years earlier waist. During that time I was getting pro- among patients with MS than among matched gressively weaker until every step I took felt control individuals [8]. Compared with the like I was forcing my way through mud.’’ general population, lifetime prevalence for a variety of psychiatric disorders, including major Patients’ experiences of receiving a diagnosis depressive disorder, is elevated among individ- of MS vary a great deal, and although these uals with MS, and suicide may be at least twice experiences seem to have improved recently, as common [9]. The factors contributing to the poor levels of support and information were still development of depression in MS are complex. being reported in 2007 [12]. Jeri received nei- However, lower educational level, greater dis- ther appropriate support nor helpful informa- ability severity, being retired owing to MS or tion following her diagnosis. being unemployed, having progressive-relaps- ‘‘I received no information about MS and ing MS (now termed primary progressive MS was sent home to await a visit from an in- with activity), one or more comorbidities, and home nurse who would teach me how to clinically significant fatigue are all associated inject myself. The medication came with a with increased risk of depression, as are a hotline number to reach a nurse if I had any number of modifiable lifestyle factors [10]. Fur- questions about my medication. I called the thermore, a significant minority of patients regional chapter of the National MS Society with MS are confined to their homes [11]. to find out anything I could. They added me In considering the impact of the Internet to their mailing list and I began receiving and social media on patients with MS, Jeri and their newsletters and quarterly magazine. I Dr. Kantor’s perspectives can be grouped into was disappointed to learn there was no local four major themes: (1) managing MS before the support group in my area.’’ advent of the Internet and social media; (2) disease awareness in the age of social media; (3) The Internet was still in its infancy when Jeri treatment awareness in the age of social media; received her MS diagnosis, and she was frus- and (4) the quality of information available on trated by the difficulty of sourcing information social media. In the following sections we about the disease. 26 Neurol Ther (2018) 7:23–36 ‘‘My mother put me in touch with a former lifetime education through Continuing Medical co-worker who was diagnosed with MS Education courses, by reading journal articles 10 years prior. We had a long talk on the and textbooks, and by interacting with other phone, but her MS was completely differ- HCPs in settings both formal (such as confer- ent from mine. Although we shared a ences) and informal (such as hallway conversa- common disease, I felt like we were tions). It was extremely time consuming for a speaking two different languages.’’ patient to remain as updated as their HCP on ‘‘I visited the library to learn more, but recent advances. Interactions between HCPs none of the books they had on neurologi- and patients occurred only in face-to-face clin- cal conditions were recent. When I was ical office visits and in group settings, when an able to get to a larger town, I would seek HCP would address an MS support group. out a bookstore like Barnes & Noble to try and find more current literature about PATIENTS WITH MULTIPLE MS.’’ ‘‘Although the Internet was available at the SCLEROSIS, THE INTERNET, time, it was cost prohibitive and I didn’t AND SOCIAL MEDIA have a decent computer, anyhow.’’ When Internet search engines first became During this pre-Internet era, patients with widely available in the early 1990s, a search of physical and cognitive problems may have been the World Wide Web (Web) for ‘‘multiple scle- particularly disadvantaged by the limited ability rosis treatment’’ would probably have yielded to have clinic visits and to recall details about few or no results; whereas today, putting this their clinical encounters [13]. In terms of overall term into a search engine yields more than well-being, patients may also have been disad- 29 million results. As well as providing access to vantaged by the more limited opportunities for such a colossal repository of information, the social interaction that existed before the arrival Web is the conduit for social media activities of the Internet and social media. Patients with (ideas, group messages, personal messages, MS can become isolated, removed from society images, videos, etc.). Social media enable users [11] and the workplace [7], and can lose the to create and communicate information and to opportunity to engage in social interactions. participate in social and professional network- Indeed, Jeri encountered these issues as her MS ing [14, 15] and there is a long history of progressed. Experiencing three or four relapses patients turning to the Internet and online annually for the first 7 years, Jeri often had to communities for advice and support [16]. An use a walker or wheelchair for months at a time. early example is Bob Willmot’s ‘‘kneeboard’’, an ‘‘I felt isolated and closed in. The more my online forum created in 1996 specifically for disease robbed from me, the more intro- patients with knee injuries, allowing them to verted and depressed I became. I was forced discuss their injuries and recovery with others to close my print shop I’d had since 1990, [17]. With increasing access to the Internet, the due to my failing health. Interacting with number of these online communities has risen my customers had been my main source of rapidly. A Pew Research Center survey found social interaction, so when my business that 74% of adults in the USA who used the closed I became even more isolated.’’ Internet in 2014 participated in social media networks [18]. Slightly more women than men HCP’s Perspective were networking (76% vs 72%) [18] and online activity was related to age and income [19]. Facebook was the most popular site (71% of Dr. Kantor described how, before the advent of online adults); LinkedIn, Pinterest, Instagram, the Internet, medical knowledge was concen- and Twitter registered 23–28% usage (Table 1) trated among HCPs: they had undergone [18–24]. Globally, this equates to nearly advanced training and had continued their Neurol Ther (2018) 7:23–36 27 Table 1 Summary of survey data Table 1 continued Survey of online N Findings Survey of online N Findings activity activity General population Disease awareness among patients with MS Pew Research 5112 74% of US adults online NARCOMS 8586 79% searched for MS Center (2014) used social media (2011) [22] treatment, 63% for MS [18] 71% used Facebook; information, and 56% for 23–28% used LinkedIn, MS symptoms Pinterest, Instagram, or 55% searched for coping Twitter with MS and 26% for how Pew Research 5512 Internet usage was related to to pay for treatment Center (2014) age, educational 18% searched for how to [19] attainment, and obtain medical care household income 60% used the WWW as a Study in USA 2390 75% of the general public primary information (2006) [20] used the Internet source when they had last Patients with MS sought health information; only 15% used their HCP Study in 586 94% of patients with MS Study in USA 2390 53% of respondents Germany had access to the Internet (2009–2010) (2007) [20] indicated that the Internet Patients who used the [21] played a key role in Internet most frequently helping them to become were most likely to be their own MS advocate receptive to using new forms of electronic Global (65 879 56% of respondents communication with countries) (2014) indicated that they used HCPs [24] social media to monitor latest MS research NARCOMS 8586 86% of patients with MS (2011) [22] had accessed the Internet 47% used the WWW to or used e-mail research MS diagnosis and treatment More than 60% of these patients accessed the 39% used social media for Internet several times a day advice on specific MS topics Study in USA 2390 93% of respondents with (2006) [20] MS used the Internet HCP healthcare professional, MS multiple sclerosis, NARCOMS North American Research Committee on Study in UK 92% of patients with MS Multiple Sclerosis, WWW World Wide Web (2010) [23] reported that they used a Multiple Sclerosis Center Dresden (Dresden, Germany), the Internet C 3 times/ Multiple Sclerosis Center Stuttgart (Stuttgart, Germany), week and several neurological outpatient centers of Neu- roTransData GmbH (Neuburg, Germany) 28 Neurol Ther (2018) 7:23–36 1 billion daily users of Facebook and 328 mil- [30]. The relatively high use of the Internet by lion active monthly users of Twitter in 2017 patients with MS compared with the general [25, 26]. population, combined with the strong interest For patients with MS, social media may help of these individuals in using online portals and them to understand and manage both their other online technologies to source information disease and their treatment options. Consider- about their condition and to communicate with ing the online activities of patients with MS, a HCPs, suggests that patients with MS may be survey conducted from 2009 to 2010 in outpa- super-adopters of emerging e-health trends tient clinics in Germany [21], as well as a 2011 [31–33]. Indeed, receiving a diagnosis of MS had survey of 8586 patients with MS in the USA and a profound psychological effect on Jeri and she Canada (the North American Research Com- was keen to find out more. mittee on Multiple Sclerosis [NARCOMS] reg- ‘‘I remember being terrified and also in istry) [22], found that most patients (86–94%) deep denial. I didn’t even know what MS had access to the Internet or e-mail, and that was—I had it confused with muscular 60–71% accessed it at least once a day. Similarly, dystrophy.’’ a UK survey from 2010 reported that 92% of people with MS used the Internet three times or The Internet and online communities helped more per week [23], and a 2007 US survey of Jeri to source much-needed information about 2390 patients with MS reported Internet use by her condition and enabled her to connect and 93% of participants, compared with 75% of the share experiences with other patients with MS. general population [20]. Notably, the German ‘‘Sometime during 2002, 3 years after my survey found that patients who used electronic diagnosis, I got a new computer and con- media regularly were more likely to accept this nected to the Internet. I researched MS media type for communication with HCPs, online, but the Internet was so new that compared with patients who used electronic finding good sources of information was media infrequently [21]. not easy. I mostly learned through anec- dotes and conversations with other patients in online forums. I spoke to DISEASE AWARENESS IN THE AGE someone with MS who my mother knew OF SOCIAL MEDIA and, at my urging, she started a support group.’’ Patient’s Perspective ‘‘I had begun working part-time from home, so I honed my online skills in for- Newly diagnosed individuals can benefit from ums for online sellers, eventually ventur- the targeted provision of online information, ing out to other parts of the Internet to because it can improve their knowledge of MS seek information about my disease.’’ and satisfaction with their care [27]. As online When individuals in the 2011 NARCOMS content has accrued, patients with MS have registry were asked about the type of informa- increasingly used the Internet both to source tion sought online, 79% nominated treatment medical information and to communicate for MS and 63% nominated general information within the MS community [28, 29]. When asked about MS; symptoms of MS (56%) and coping about the most recent time that they sought with MS (55%) were also actively researched, as information, 60% of patients in the 2011 NAR- were paying for (26%) and exploring where to COMS registry cited the Internet as their first obtain (18%) medical care [22]. However, the source of information about MS (compared with most trusted information source was still an 15% seeking information from their HCP) [22]. HCP, with 98% of patients reporting that they Similarly, in 2014 it was estimated that 72% of trusted a physician somewhat or a lot [22]. In a US and European patients with MS found social separate survey of 879 patients from 65 coun- media and online resources most helpful for tries that was published in 2014, about half of obtaining information about their condition Neurol Ther (2018) 7:23–36 29 the participants used social media to monitor Table 2 Potential benefits of social media in health care [15, 42–44] the latest MS research (56%) and about half to gather information on diagnosis and treatment Improved physician–patient communication (47%); the most common sources of informa- tion were MS organization websites, followed by Increased patient motivation medical or scientific sites and HCPs (Table 1) Timely awareness of important issues [24]. In a 2007 survey of 2390 US patients with MS, 53% of respondents also revealed that Greater access to accurate health information Internet use had helped them to become their Engagement of a large number of patients own MS advocate [20]. Encouragement of debate and exchange of ideas In addition to individual HCPs using social media to educate and advocate for people with Improved patient access to health services and social MS, institutions have increasingly carved out a support presence in the social media sphere. While it Better outcomes seems that some institutional accounts are managed by individuals with little direct Behavioral change and better treatment knowledge of the needs of patients with MS, adherence/compliance others are managed either by HCPs affiliated Reduced healthcare resource usage and overall costs with the institution or by their delegates. However, Jeri does not recall having been Public health surveillance directed to websites or social media accounts by Better-informed treatment decisions any of the tertiary care centers with which she has been involved. By contrast, advocacy groups such as the National Multiple Sclerosis Society (http://www.nationalmssociety.org) and the are the abilities to promote health education Multiple Sclerosis Association of America and to improve health behavior and access to (mymsaa.org) do seem to have a strong online health services among large numbers of patients presence, and Jeri relies heavily on these sites [15, 41–44]. Indeed, providing patients who for information. have MS with appropriate information appears to increase their disease-related knowledge [45]. HCP’s Perspective Moreover, access to online information and engagement through social media may influ- As is evident in the literature [34], Dr. Kantor ence patients’ adherence to treatment and their noted that patients with MS are generally con- coping strategies, and lead to greater empow- sidered to be extremely well informed. How- erment and improved clinical outcomes ever, various studies have shown that their [21, 31, 46]. While the role of social media in information needs and Internet activities vary supporting patients tends to be positive, both according to individual characteristics, the patients and HCPs need to be aware of the length of time since diagnosis, and disease type, potential pitfalls (Table 3), such as identifying stage, and severity [34–38]. Low levels of health reliable and trustworthy sources of information literacy are linked to increased risk of adverse (discussed later), concerns about patient confi- health behaviors (e.g., smoking or being over- dentiality, and maintaining appropriate weight or obese) [39], increased healthcare uti- patient–HCP relationships (discussed in more lization (hospitalizations and emergency room detail in the accompanying ‘‘Participatory use) [39, 40], less participation in health pro- medicine’’ article). motion programs, poorer treatment adherence The findings of a US study from 2014 high- and patient outcomes, and worse overall health light the need for careful research to ensure that status [40]. Among the potential benefits of dissemination of information by any particular social media highlighted by Dr. Kantor (Table 2) channel is effective [47]. The study found that 30 Neurol Ther (2018) 7:23–36 Table 3 Potential pitfalls of social media in healthcare However, Dr. Kantor has noticed that the ways [13, 42–44, 54, 55] in which some institutions use social media resemble the manner of usage by individual Information may be incorrect, misleading, or lacking an HCPs; these cases are probably attributable to evidence base usage by an individual HCP employed by the institution. However, other institutions appear Inappropriate format, layout, contrast, and sizing can to use social media as a marketing tool to retain limit patient uptake current patients and to attract new ones. Confidentiality, privacy, and other ethical issues may arise TREATMENT AWARENESS Liability, professionalism, and legal concerns may deter IN THE AGE OF SOCIAL MEDIA physician uptake Patient–HCP boundaries could be violated Patient’s Perspective Platform use may affect HCP productivity Patients search for MS-related information online, including drug treatments and side effects, emerging research, new and alternative treatment options, and HCPs’ credentials HCP and patient awareness/knowledge of the [22, 24, 29, 31, 36, 49]. Jeri also used several American Academy of Neurology Clinical Prac- online resources to help address her concerns tice Guideline ‘‘Complementary and alternative about the potential side effects of medication medicine in multiple sclerosis’’ was not and to find information about switching increased by adding novel routes of dissemina- treatments. tion (e.g., Facebook, Twitter, YouTube, and LinkedIn) to more traditional routes (e.g., print, ‘‘I remember a specific incident when my e-mail, and Internet-based methods). Tradi- PCP [primary care provider] prescribed an tional dissemination may already have satu- antidepressant. I was afraid to take it rated the target audience, or social media may because I’d been reading about the side not have been the most appropriate channel for effects on the package insert. I searched on this type of information [47]. MSWorld [http://www.msworld.org/] for Dr. Kantor also noted that programs aimed at anything I could find about the medica- modifying health behaviors may be honed by tion. I also posted that I was about to start understanding patient concerns garnered from taking it and wondered about things like social networking sites. For example, in an dependency and mood changes. Almost Italian study conducted in 2011, patients with instantly others from around the world MS reported that they trusted social networks were commenting and sharing their expe- because they considered the users (i.e., fellow riences, giving me the feedback I needed to patients) to be independent of commercial or make my own decision.’’ other interests [28]. Social networks afford HCPs ‘‘I noticed people were also sharing about the opportunity to share reliable, high-quality how they were switching MS medications information, and to develop health messages when theirs ‘quit working’ for them. The that are more likely to resonate with and be next time I saw my neurologist I asked him adopted by patients [43], while simultaneously about switching.’’ responding to the demand by patients for an In the 2014 global MS survey, more than interactive communication that is easy to access one-third of respondents (39%) reported that [48]. they used social media to seek the opinions of There is little published information on the others on specific topics [24], which Jeri also similarities and differences between institu- noted. tional and individual HCP social media use. Neurol Ther (2018) 7:23–36 31 ‘‘I have noticed there is a trend in online PatientsLikeMe, have written extensively on use of social media among patients with topics ranging from the emotional and physical MS and other chronic conditions that they challenges of living with MS through to issues interact online when seeking advice about the pharmaceutical industry [50, 51]. because they’re having problems. Whether Twitter has also been used to investigate it is due to new symptoms and they want patients’ experiences with MS drug therapies to hear how others have dealt with them, [52]. Of a total of 60,037 tweets posted between or they think something might be an 2006 and 2014 that mentioned approved MS adverse event caused by their medication, treatments, almost half contained non-neutral online activity among a large portion of sentiments about treatment, although the most those with MS involves finding out what commonly tweeted words related to routes of others think about their current crisis administration and effects of treatment (in- situation.’’ cluding known side effects) [52]. Dr. Kantor also highlighted how patient In 2007, after deciding to enroll in a clinical experiences shared via social media are now trial, Jeri started a blog to document her expe- being used to answer specific questions relating rience from the patient’s perspective, and con- to MS outcomes. For example, content posted tinues to contribute regularly to online by US patients to Facebook, Twitter, blogs, and activities related to MS. Sharing the experiences online forums in 2013 and 2014 mentioning of other patients with MS can be empowering, specific oral, injectable, and intravenous MS giving individuals the confidence to discuss treatments was collected and analyzed to disease management options with their HCP. understand patients’ switching behaviors. ‘‘When patients talked about switching Compared with more traditional methods of medications often they just stated that research (e.g., retrospective analyses of claims their current medications were either ‘not databases), this approach provided novel working’ for them anymore, or they were insights into patients’ personal experiences of ‘fatigued’ by the side effects. Some even their treatments and common reasons for spoke of ‘drug holidays’ which intrigued switching treatments [53]. me.’’ Given that use of social media has almost ‘‘Delivery method seems to be a big con- certainly led to a patient population that is cern among those who are newly diag- better informed about current treatment nosed compared to those who lived options, Dr. Kantor believes it reasonable to through the era where your only choice expect that this has also led patients to chal- was injectable.’’ lenge their HCP’s prescribing recommendations ‘‘Most of these conversations come up more often, further influencing their practice when a doctor has said it was time to patterns. Patients offering guidance to each switch, and the patient is trying to research other can be beneficial to HCPs, because this their choices, or when a patient feels it’s reduces the time that HCPs need to commit to time to switch and wants to figure out educating patients about their disease process which drug to pitch to their doctor.’’ and treatment options, and time can be better spent making shared decisions on patient care. HCP’s Perspective QUALITY OF INFORMATION A major advantage of social media highlighted ON SOCIAL MEDIA by Dr. Kantor is the insight it offers into the real-world views held by patients regarding their Patient’s Perspective disease, its treatment, and their care. For example, patient bloggers such as Wheelchair A 2009 survey of Internet use among Israeli Kamikaze, and numerous contributors to patients with MS found that most believed that 32 Neurol Ther (2018) 7:23–36 information on the Internet was as trustworthy ‘‘Knowing who to trust on the Internet isn’t easy, even for people who think they as that in books [36]. By contrast, studies con- ducted in 2011 showed that North American have become savvy at discerning real information from a scam. When in doubt, [22] and Italian [28] patients had concerns about the quality and trustworthiness of infor- my best advice would be to speak to your mation online, and had difficulties in accessing doctor.’’ or understanding the information they wanted The reliability of information is clearly an [22, 28]. Jeri also raised this concern. important issue for many patients: in the Mul- ‘‘Finding a way to verify the factual infor- tiple Sclerosis International Foundation (MSIF) mation people were posting was nearly 2014 global survey examining information impossible. At first, I would take every- technology use and MS, one-third of patients thing everyone said as fact, or if they pro- with MS reported content with ‘a scientific or vided links to websites that purported to statistical basis’ to be the factor that most have the miracle cure, etc., I’d get excited increased the reliability of MS information; furthermore, some patients verified information and think maybe they were on to some- thing. This would lead to a cycle of getting independently using public databases such as PubMed [24]. Jeri also adopted an evidence- my hopes up, followed by having them dashed, and finally becoming jaded to based approach as her experience in seeking MS-related information increased. anything I read or heard. It would take a while before I would develop the Internet ‘‘Writing about MS led me to hone my savvy that helped me become a discerning, online research skills, diving deeper into scrutinizing consumer of the Internet.’’ using tools like Google Scholar and learn- ing how to avoid sources that may not However, over time, Jeri learned how to identify reliable sources of information. have the best information. I learned to trust sources that cited their own sources, ‘‘I learned to look for clues and to always began looking for the HON Code symbol question the motives or goals of whatever on sites, indicating they met the criteria for website I landed on. If they were promot- providing trustworthy health information ing a ‘cure all’ product, I knew they were as laid out by the Health on the Net only interested in sales. If articles were Foundation.’’ surrounded by ads for products that appeared to be ‘too good to be true’, I In the same MSIF leaflet that published these would back out. Over time, I began looking results, guidance was also provided for patients for validating sources to corroborate and HCPs on how to get the most from the whatever ‘facts’ were being presented. If Internet [24]. It includes a section on how to the sources included links to published, evaluate the trustworthiness of websites and highlights the importance of checking factors peer-reviewed white papers or study results, then I was more inclined to trust such as who is responsible for the website con- tent, and whether content seems reliable or is the content I was reading. But even then, I learned to delve further. If something was presented in an unbiased and easy-to-read for- mat [24]. written by a person with ‘PhD’ or ‘MD’ after their name, it didn’t necessarily mean that it was credible. If it was a topic I was HCP’s Perspective seriously interested in, perhaps something controversial like CCSVI [chronic cere- Among the potential benefits of social media brospinal venous insufficiency] for outlined by Dr. Kantor is the ability to rapidly instance, then I would research the disseminate accurate, evidence-based health- authors’ backgrounds as well to see what care information and educational resources to motivated them.’’ large numbers of patients and to counter Neurol Ther (2018) 7:23–36 33 inaccurate online material; this is supported by overseen by neurologists and psychologists findings from several recent studies [41–43]. Dr. experienced in MS, who intervene if any false Kantor also highlighted how, in the age of social or inappropriate medical information is posted media, face-to-face interactions remain impor- [57, 58]. Dr. Kantor recognizes how initiatives tant, and there may be a need to encourage such as these could help to counter the mass of patients to talk with their HCP about what they false, misleading, or unsubstantiated informa- have encountered online. Indeed, in a US sur- tion about MS that exists online, although vey of patients who presented for the first time there are time and cost implications associated at an MS clinic between 2003 and 2005, 82% of with such efforts. individuals with MS had performed web-based searches in preparation for an initial consulta- CONCLUSIONS tion, so it was perhaps surprising that only 36% of patients who gathered information before As identified by Jeri and Dr. Kantor, as well as their first appointment subsequently discussed across different countries in the supporting lit- it with their HCP [31]; this lack of clinical cor- erature, the rise of social media and the wide- roboration highlights the possible pitfalls of spread use of healthcare-related information on potentially unreliable ‘‘medical’’ information. the Internet in the MS patient community have Examples of such unreliable information have had a profound impact on the disease area. been highlighted in various studies, including Individuals with MS are now connected to each an expert analysis of 25 French-language Inter- other and to sources of information regarding net sites about MS [54]. All content (collected their condition more than ever before. This has on a single day in 2014) was deemed to be enabled patients to educate themselves about mediocre and poorly referenced, highlighting their condition, so that they are better informed the need for HCPs to provide patients with about MS and its treatment, and has empow- guidance on where to find reliable information ered them to take an active role in making online [54]. Access to poor-quality information decisions about their health care. Social media may be of particular concern when the content and the Internet have also allowed HCPs to relates to a proposed new treatment that lacks promote health education and to disseminate an evidence base, such as CCSVI. A 2016 anal- accurate medical information more easily, and ysis of all YouTube videos relating to CCSVI have enabled HCPs to steer patients towards posted between December 2009 and July 2011 unbiased peer-reviewed or society-endorsed found that most presented a positive or unbal- sources of information online. This is particu- anced view of the treatment, and did not larly important given the wealth of content that acknowledge the lack of supporting scientific is incorrect, misleading, or lacking an evidence evidence or the possible role of the placebo base. At the same time, HCPs have become effect [55]. more aware of the benefits that such platforms Web initiatives, such as the Integrating and can confer in terms of patient education. While Deriving Evidence, Experiences and Preferences HCPs are more aware than they have been his- (IN-DEEP) project, have been developed torically of the benefits in terms of patient specifically to counter such issues [56]. Estab- education that such platforms can confer, the lished as part of an Australian–Italian collabo- time needed to assimilate their use into routine ration, IN-DEEP aims to provide accessible and clinical practice may be a limiting factor. meaningful evidence-based information to Finally, even if the Internet and social media are patients with MS, relevant to situations that the sources that patients use most frequently to they might encounter in everyday life [56]. In research their condition, HCPs are still the most addition, an online community (http://www. trusted sources of healthcare information, and smsocialnetwork.com) was established in 2012 their contributions to online media are to allow Italian patients with MS to exchange invaluable. information based on sound medical and sci- entific evidence with each other. All content is 34 Neurol Ther (2018) 7:23–36 Attribution-NonCommercial 4.0 International ACKNOWLEDGEMENTS License (http://creativecommons.org/licenses/ by-nc/4.0/), which permits any noncommer- Editorial and medical writing support of the cial use, distribution, and reproduction in any manuscript and the journal’s article processing medium, provided you give appropriate credit charges were funded by Novartis Pharmaceuti- to the original author(s) and the source, provide cals Corporation. The authors acknowledge Ian a link to the Creative Commons license, and Williams of Oxford PharmaGenesis, Oxford, indicate if changes were made. UK, who provided editorial and medical writing support, and Kathleen Hawker, formerly of Novartis Pharmaceuticals Corporation (East Hanover, NJ, USA), who reviewed the article REFERENCES during the early stages of development and conducted the interview with Jeri Burtchell. In 1. Hakim EA, Bakheit AM, Bryant TN, et al. 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Neurology and TherapySpringer Journals

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