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

Perspectives from the Patient and the Healthcare Professional in Multiple Sclerosis: Social Media... Neurol Ther (2018) 7:37–49 https://doi.org/10.1007/s40120-017-0088-2 COMMENTARY Perspectives from the Patient and the Healthcare Professional in Multiple Sclerosis: Social Media and 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 participatory medicine and to improve com- ABSTRACT munication with and among patients. We con- sider both the benefits afforded to and the When faced with a diagnosis of multiple scle- potential pitfalls faced by HCPs when interact- rosis (MS), patients often turn to the Internet ing with their patients via these routes, and and social media to find support groups, read discuss potential concerns around privacy and about the experiences of other people affected confidentiality in the use of the Internet and by MS and seek their advice, and research their social media in the clinical context. Commu- condition and treatment options to discuss with nication online is driving the evolution of the their healthcare professionals (HCPs). Here, we patient–HCP relationship, and is empowering examine the use of social media and the Inter- patients to participate more actively in the net among patients with MS, considering its decision-making process relating to the provi- impact on patient empowerment and patient sion of their health care. participation in treatment decision-making and Funding Novartis Pharmaceuticals MS research. These themes are exemplified with Corporation. first-hand experiences of the patient author. We also explore the impact of the Internet and social media on the management of patients Keywords: Internet; Multiple sclerosis; Online; from the perspective of HCPs, including new Participatory medicine; Patient voice; Shared opportunities for HCPs to engage in decision-making; Social media; Web Enhanced content To view enhanced content for this article go to http://www.medengine.com/Redeem/ 86FCF0604435B798. INTRODUCTION D. Kantor (&) Individuals receiving a diagnosis of multiple Florida Atlantic University, Boca Raton, FL, USA sclerosis (MS) face many life-altering challenges. e-mail: info@KantorNeurology.com However, over the last decade, improved access J. R. Bright to high-quality information and the ability to TM Oxford PharmaGenesis Ltd, Oxford, UK share experiences with other MS patients through the Internet and social media have J. Burtchell HealthiVibe, LLC, Arlington, VA, USA helped patients become more knowledgeable about their condition and about MS research, J. Burtchell including their diagnosis, treatment options, Partners in Research, East Palatka, FL, USA 38 Neurol Ther (2018) 7:37–49 and clinical trials. This has allowed patients to Multiple Sclerosis Association of America’s manage their disease proactively and, in some Healthcare Advisory Council. The patient’s cases, has afforded the opportunity to influence perspective is provided by Jeri Burtchell, a clin- clinical research. As early as 2007, a survey of ical trials awareness activist, MS patient advo- 2390 Americans with MS reported Internet use by cate, founder of Partners in Research, and 93% of participants (compared with 75% of the Director of Patient Initiatives at HealthiVibe, general population), of whom 53% indicated LLC. These perspectives are drawn together, in that it had helped them to become their own MS the context of published research, by Jeremy advocate [1]. As well as being widespread among Bright, a medical writer at Oxford PharmaGen- patients, the use of social media among Western esis with a special interest in MS. This article healthcare professionals (HCPs) has dramatically also includes some of Jeri’s experiences since increased in recent years, rising from 42% of receiving an MS diagnosis in 1999, 3 months practicing physicians in 2010 [2] to almost 75% after the onset of symptoms. in 2013 [3]. Among HCPs, 65% use social media The patient’s perspective was provided as for professional reasons, mostly in professional follows: a Novartis employee drafted a set of networks and clinical practice, but also for questions for use in a subsequent interview with informing and helping patients [4–6]. the patient author (Jeri Burtchell). During the These developments have empowered patients interview, Jeri’s responses to these questions to act more in partnership with their HCPs in were recorded. Unedited and non-paraphrased determining what care they receive, shifting away quotes were taken directly from the recordings from a traditionally passive role to an active, self- and used as required throughout the manu- governing one, with participatory decision- script. The HCP’s perspective was provided making playing a key part in determining treat- directly by the HCP author, Daniel Kantor. To ment [7]. In this article, we aim to explore the the best of our knowledge, this ‘‘patient–HCP impact of virtually instant global access to infor- dyad’’ approach has not been used before to mation on the interaction between patients with explore patient and HCP perspectives regarding MS, the HCPs who treat them, and the MS com- the impact of the Internet and social media on munity. These interactions are examined in terms the interaction between members of the MS of participatory medicine, of the direction of MS community. Adopting this novel approach thus research, of the sharing of experiences among enabled us to gain detailed and direct insights patients, and of the privacy and ethical consider- into specific issues not previously reported. ations when using social media and the Internet The patient and HCP perspectives described in healthcare communications. in this article were provided by single individ- uals from the USA. As the insights yielded by this approach are specific to the authors’ per- METHODS sonal experiences, the generalizability of the findings may be limited as they may not be This article offers qualitative case study-based representative of those of the wider MS popu- insights from the patient and HCP authors, lation and other HCPs. In order to minimize both of whom are from North America. As in any bias, a separate literature search was con- our accompanying article, which examines the ducted to identify relevant articles that con- impact of social media and the Internet on textualized the themes identified by both the aspects of patient education, the HCP’s per- patient and HCP authors. Supporting published spective in this article is provided by an MS references and online resources relating to specialist, Daniel Kantor, MD, FAAN, Past Pres- Internet and social media use in MS were iden- ident of the Florida Society of Neurology, Pres- tified using MEDLINE and Google Scholar, with ident of the Medical Partnership 4 MS, Chief the search strings ‘‘multiple sclerosis [Title/Ab- Medical Correspondent for MSWorld, and an stract] AND social media [Title/abstract]’’ and active member of the Multiple Sclerosis Foun- ‘‘multiple sclerosis [Title/Abstract] AND Internet dation’s Medical Advisory Board and the [Title/Abstract]’’. Neurol Ther (2018) 7:37–49 39 Compliance with Ethics Guidelines role, following the instruction of their physi- cians with little input into the decision-making process. Jeri was diagnosed with MS in 1999, This article does not contain any new studies 3 months after the onset of symptoms. Below, with human or animal subjects performed by Jeri recalls what little involvement she had any of the authors. regarding the treatment she would receive. ‘‘At that second visit to my neurologist’s OVERVIEW OF KEY FINDINGS office, when he gave me the bad news, we discussed all the available treatment In exploring the impact that the Internet and options. They were all injectable drugs, social media have had on interactions between only one of which was not an interferon. members of the MS community, Jeri and Dr. This was the drug my doctor chose for me. Kantor’s perspectives could be grouped into We didn’t choose together because, in my four major themes: (1) participatory medicine eyes, he was the expert and knew best.’’ and the changing face of patient–HCP interac- tions; (2) promoting and fostering MS research; Jeri would typically have three or four (3) sharing experiences and interpersonal con- relapses annually for the first 7 years, and often tact; and (4) privacy, confidentiality, and ethical had to use a walker or a wheelchair for months considerations. In the following sections, we at a time. Despite asking if she could switch to a present Jeri and Dr. Kantor’s views on each of more effective treatment, her HCP said she these topics and contextualize them in terms of should remain on her current therapy. the available literature. Two further sections ‘‘When I asked my doctor about switching outlining the future potential of social media [treatment], I didn’t understand why he and concluding remarks from Jeri have also thought my drug was working when I was been included to provide additional informa- having bona fide relapses requiring steroid tion on this topic. use several times per year.’’ ‘‘At the time there were only four MS drugs PARTICIPATORY MEDICINE: and I was taking the only one that wasn’t CHANGING FACE OF PATIENT–HCP an interferon. He insisted I stay on the therapy I’d been on all along, reassuring INTERACTION me that my MS would be ‘so much worse’ if I weren’t taking it.’’ Participatory medicine has been defined as a model of cooperative health care that seeks to ‘‘I had no idea that I could challenge my achieve active involvement by patients, HCPs, doctor, or even that I could find a new one. caregivers, and others across the continuum of Since he was the only one in my town, I care on all issues related to an individual’s felt I had no choice. I was despondent that health [7, 8]. Participatory medicine is consid- I was relapsing so often and felt like things ered to be an ethical approach to care that may might never get any better.’’ help to improve outcomes, reduce medical Central to the success of participatory med- errors, increase patient satisfaction, and reduce icine is the dynamic between HCPs and the cost of care through partnership between patients. While physicians bring their training patients and their HCPs [7, 8]. and clinical expertise, patients bring their life experiences, skills, and resilience, their deep Patient’s Perspective investment in their long-term health, and a unique perspective on needs and priorities [9]. In the traditional model of biomedical care (one Effective patient–HCP partnerships build trust, of medical paternalism), HCPs hold the position help patients feel informed, in control, and of authority while patients assume a passive empowered, and promote shared decision- 40 Neurol Ther (2018) 7:37–49 making in effective and time-efficient consul- appointment subsequently discussed it with tations [10, 11]. Seven years after her initial their HCP [12]. This is especially surprising diagnosis, an opportunity arose for Jeri to given that patients within the 2011 North engage with a different HCP. American Research Committee on Multiple Sclerosis (NARCOMS) registry indicated that ‘‘In 2006 my neurologist had a stroke and I their most trusted information source was an was left without a doctor. I would wind up HCP, with 98% of patients reporting that they at my PCP’s [primary care physician’s] office trusted a physician ‘‘some’’ or ‘‘a lot’’ [13]. every time I had MS symptoms and he Dr. Kantor also noted how in recent years, finally convinced me in 2007 that I needed the importance of shared decision-making in to see a new neurologist in a nearby city.’’ patient–HCP communication has gained Jeri discussed the advantages and disadvan- increasing recognition, particularly for chronic tages of different treatments with her new diseases such as MS for which the treatments are neurologist. The interaction followed a partici- not curative. Indeed, a German study found patory model, and Jeri’s interaction with the that between 2001 and 2007, 80% of patients online MS community helped her to become with MS demanded autonomous roles in deci- more assertive in the management of her care. sions relating to their treatment [14]. Given that use of social media has almost certainly led to a ‘‘I didn’t want to take one of the interferon patient population that is well informed about medications (my only other option) due to current treatment options, it would be reason- the fear I’d developed based on the strong able to expect that this has resulted in patients feelings my former neurologist had challenging their HCP’s prescribing recom- regarding them, and also from reading so mendations more often and further influencing much from patients online who shared their practice patterns. Published evidence their ‘flu-like symptoms’ and feeling mis- examining the effects that social media may erable on the medication.’’ have had on the shared decision-making pro- ‘‘Before the Internet, when first diagnosed, cess is scant, but this is an area where more I depended on my neurologist. His opinion research would be valuable. was the final say about everything from use Although HCPs generally welcome a well- of steroids to physical therapy to which informed patient base, given that a better disease-modifying medicine I would use. understanding of treatment may lead to greater The Internet empowered me as a patient to adherence and patient engagement, Dr. Kantor become informed about my condition, to acknowledged that some HCPs may feel defen- consider my options and the opinions of sive when patients challenge their medical others, and to take charge of managing my knowledge or recommendations. He explained disease in the best possible way for me.’’ that although modern medicine is much less paternalistic than it was several decades ago, the HCP’s Perspective expectation that HCPs’ authority should be respected (if not revered) still lingers in some quarters. Dr. Kantor highlighted how clear, two-way Attempts have been made in the literature to communication is vital to foster successful quantify the influence of social media on the partnerships between patients and HCPs, patient–HCP relationship, albeit not specifically something that is also described in the literature relating to MS. In a multidisciplinary survey of [10, 11]. In a US survey of patients who pre- 232 Brazilian HCPs carried out in 2011–2012, sented for the first time at an MS clinic between 57% thought use of the Internet helped the 2003 and 2005, 82% of individuals performed patient–HCP relationship, but 28% thought it web-based searches in preparation for their ini- interfered with it, and 16% felt it had a negative tial consultation. Hence, it was perhaps sur- impact [15]. A small qualitative multidisci- prising that only 36% of those who had plinary survey of German HCPs, patients, and a gathered information before their first Neurol Ther (2018) 7:37–49 41 patient organization representative published appointment we discussed the pros and cons of being in a study, and we weighed in 2012 largely echoed these findings. Most patients from Germany continued to regard the options.’’ their HCP as the expert, but being a better- ‘‘So I took the informed consent home to informed patient made the relationship with read, and share with friends and family to their HCP more balanced, with patients get opinions on whether or not I should becoming more critical and interrogating rec- join.’’ ommendations made by their HCPs [16]. No German HCP reported feeling threatened or ‘‘I also tried to find anything online from a undermined by this shift in the relationship, patient perspective about participating in a clinical trial. All I could find was from the but some noted that consultations could be prolonged when patients attended their con- research side.’’ sultation ready-armed with a self-diagnosis Jeri took the decision, which was at the time based on Internet research [16]. unusual, to blog her experience of participating However, findings from UK and US articles in this trial. have shown that with HCPs becoming increas- ingly burdened by non-face-to-face commit- ‘‘My blog would come to be widely accep- ments (such as inordinate time spent obtaining ted as the first start-to-finish blog of a prior authorizations), a more engaged and self- clinical trial from a patient perspective. A educated (social media-educated) patient base pharmaceutical executive once dubbed me has the potential to help improve the efficiency the ‘godmother of the intersection of social media and research’.’’ of the delivery of care [4, 17, 18], perhaps by enabling patients to ask more informed ques- US-based social media and websites (e.g., tions about their disease, thus saving some of PatientsLikeMe) are now widely used by the time that HCPs need to commit to educat- patients with MS not only to find information ing patients about their disease process and on clinical trials, such as how to participate in treatment options. them and study results, but also to communi- cate their on-trial experiences [19–22]. Further- more, this avenue of communication affords PROMOTING AND FOSTERING patients the opportunity to provide input on MULTIPLE SCLEROSIS RESEARCH trial design. Indeed, this is also something Jeri has been actively involved in. Patient’s Perspective ‘‘Currently I work for HealthiVibe, LLC, a company focused on bringing the patient Before the availability of the Internet, and even perspective to clinical trial design and until quite recently, patients would probably patient-facing initiatives so our pharma- have learnt about a trial of a new drug from ceutical clients can design studies and newsletters (as Jeri did in 2006–2007), or from programs that are more meaningful and their HCP. patient-friendly.’’ ‘‘I was still learning about MS from offline Concerns have been raised in the literature sources at this time and when I received a that large numbers of patients interacting via MOMENTUM magazine from the National social media during a clinical trial could have MS Society talking about a new pill form of the unwanted consequence of breaking the treatment still in clinical trials and blinding of a study [20]. Again, this was some- recruiting, I decided to ask my new doctor thing that Jeri identified with and had also about it. My new neurologist was Dr. experienced directly. Daniel Kantor who, at the time, was lead investigator for the TRANSFORMS trial at ‘‘The question of possible unblinding due the University of Florida. At my first to patients finding each other via social 42 Neurol Ther (2018) 7:37–49 media has become a real issue. A few of us disease-modifying treatments [24]. Social media who remained in contact did reach out to could also be used by patients for real-time each other once we’d been unblinded to reporting of adverse events [25]. see if the others knew. We were all correct in our suspicions. But we all agreed that SHARING EXPERIENCES regardless of having found each other, it’s AND INTERPERSONAL CONTACT only natural to wonder which arm you are in and to guess—whether silently to your- Patient’s Perspective self, or out loud to family, friends, or those on social media. Together with a handful of blog followers who had joined the clin- Jeri was a frequent user of online forums, and as ical trial, I created a Yahoo! group to have a time progressed, she began to build up her own more private place for us to gather and network of trusted members and online sources. commiserate. In order to gain access, ‘‘After posting on forums for a while, I members had to prove they were in the began to privately message other members trial by sending me a photo of their medi- and online relationships—some of which cation bottle. While some people did want continue to this day—began. It was in this to talk about possible side effects and try to way that we developed a network of trus- figure out if they were on the real drug or ted sources within the larger MS forums, not, mostly we talked about normal things and we would share links to information, like family and jobs.’’ or other forums.’’ It is evident that social media provides an HCP’s Perspective invaluable channel of communication and interaction for people with disabilities [26] and There are several published examples of the has the potential to relieve social isolation and successful use of social media to recruit partici- improve quality of life by connecting patients pants to MS studies, including a US trial exam- to the wider world. For example, among indi- ining the adverse effects of switching treatment viduals in the 2011 NARCOMS registry, 61% and a large Australian study assessing factors used the Internet for social networking [13]. The that may contribute to fatigue [20, 21, 23]. In Multiple Sclerosis International Foundation 2012, the US Food and Drug Administration (MSIF) 2014 global survey examining technol- also approved a ‘‘crowdsourced’’ protocol for an ogy use and MS also revealed that social media MS trial that was developed with an online was used for peer support and for building an community of patients, HCPs, and researchers MS community, with more than one-third [22]. Dr. Kantor also noted that in addition to (38%) keeping in touch with other people with pharmaceutical company and MS patient MS [27]. Jeri found the ‘‘connecting’’ aspects of advocacy websites that act as gateways to clini- social media particularly valuable, and rela- cal trials, patients with MS write blogs that offer tionships within her network strengthened as a advice on accessing clinical trials, and MS direct result of being able to connect with each community websites promote participation in other instantly. studies (e.g., http://partnersinresearch.org, http://mymsteam.com) and encourage partici- ‘‘During the time I was blogging, I had my pants to share their research experience (http:// posts set up to automatically show up on projectdreamnow.org, http://patientslikeme. Facebook and Twitter. Although I had used com). Indeed, in 2009 an online community Facebook to some degree, I had never used of US patients with MS was used to develop a Twitter very much.’’ self-report questionnaire in order to quantify ‘‘When I got a smartphone in 2011, how- adherence and to identify any barriers to ever, I became even more involved in achieving adherence that are specific to MS social media. The apps for Facebook, Neurol Ther (2018) 7:37–49 43 Twitter, and LinkedIn allowed me to con- HCP’s Perspective nect to others even when I wasn’t at my computer, which resulted in a much dee- Rather than being spectators to their patients’ per, richer social media experience. I could use of health-related information on the Inter- share with others instantly instead of net and social media, Dr. Kantor outlined how waiting to blog once I got home.’’ HCPs have become involved in actively using these channels (a number of reasons that might ‘‘Because I had cultivated a group of friends motivate HCPs to have a social-media presence whose opinions I trusted, the feedback was are summarized in Table 1)[33]. Studies have meaningful and almost always instant.’’ shown that social networks afford HCPs the Examples of the kinds of social networks that opportunity to communicate with online have been developed for patients with MS patient communities, and share health mes- include http://mymsteam.com. This US forum sages that are likely to resonate with patients was set up specifically to allow patients to talk and be adopted by them [6], while simultane- to each other about the day-to-day realities of ously responding to their requests for accessible, living with MS, sharing practical tips and per- interactive, two-way communication [34]. Evi- sonal experiences, as well as providing support dence suggests that social media may also and advice to each other on issues that can only improve patient outcomes and reduce health- be answered by someone living with the con- care resource use [35]. Indeed, data from a 2015 dition [28]. During a presentation at the 2015 systematic review and meta-analysis found that conference of the European Committee for social networking site interventions in Aus- Research and Treatment in Multiple Sclerosis, it tralia, the UK, and the USA had a statistically was noted how sharing experiences on social significant positive effect on the promotion of media helps patients feel less alone, giving them health-related behavioral change [36]. hope and providing an opportunity to talk Indeed, US HCPs may use social media, such about things they felt were too embarrassing or as Twitter and Facebook, for the purposes of stressful to share with close friends and family enhancing communication with their patients (e.g., issues with incontinence) [29]. The Inter- and the wider healthcare community, including net also provides opportunities to explore providing patient education and disseminating patients’ experiences of living with MS and of public health information [37]. Across regions, different treatment options, such as those in the the most widely used channels tend to be online MS in America study, as reported on the http:// communities that allow for catching up on the MultipleSclerosis.net website [30]. latest news and developments, and networking Social media has also transformed how and communicating with colleagues on patient patients and HCPs communicate with each issues [5, 38]. With this in mind, MS HCPs could other, especially in regions that have highly set up a Facebook page or Google? circle specif- developed healthcare systems, such as Canada, ically to distribute disease-based information and Europe, Israel, and the USA. Traditionally, HCPs andpatientswithMSinthese regions Table 1 Reasons why physicians use social media [33] have communicated and exchanged informa- tion via face-to-face contact during clinic visits To connect To be challenged as part of routine follow-up. However, as more and more patients use computers and mobile To engage To be supported electronic devices to access health-related To inform To lead information, they are also becoming more To reflect To learn interested in using digital technologies to complement face-to-face communications To share To inspire with their HCPs [31, 32]. 44 Neurol Ther (2018) 7:37–49 guidance to patients, and to provide links to sites media in healthcare settings [40], and this may with other relevant information [4, 37]. Such influence how patients engage with and benefit platforms also provide an opportunity to post from social media. This was a particular concern videos and newsletters and to conduct web-based for Jeri. seminars [6]. Institutions can play a valuable role ‘‘With more and more platforms becoming in using social media as a vehicle for patient available for patients to connect, I believe education, but as described in the accompanying security and privacy are being better article on patient education, institutional use of addressed.’’ social media is not always directed in this way nor is it always managed by individuals with knowl- ‘‘The privacy of Facebook groups was hard edge of patient needs in MS. to understand for some at first. When their In terms of patient–HCP interaction, Dr. Kantor posts would appear in their own Newsfeed explained that there is a need to consider the dif- outside of the group, people became ferences between using social media to disseminate alarmed and raised the question of privacy information to large groups of patients and using it with the group admins [administrators]. I to interact directly with an individual patient. believe nowadays Facebook users have a Evidence suggests that the communication better understanding of how privacy works options offered by social media may help to pro- within groups. That’s not to say there mote efficient use of resources and staff time [4]. aren’t strong suspicions among patient However, despite a rapid increase in its use, many members of these groups that there are HCPs are reluctant to incorporate social media into ‘plants’ who are members of pharmaceuti- routine clinical practice owing to uncertainty sur- cal companies trying either to learn about rounding ethical and legal obligations, public the purpose of any given group, or to cor- access [2, 3], data security, and privacy regulations rect misinformation about their product, (e.g., the Health Insurance Portability and or even to speak badly of a competitor’s Accountability Act), managing the expectations of drug. The group admins try to stay on top social media-savvy patients, and the lack of reim- of these types of accounts, researching bursement for time spent. Indeed, results from a other activity to gauge whether or not the survey of Australian HCPs published in 2015 account is that of a real patient.’’ revealed that 66% of respondents were hesitant to engage fully in communications with patients via HCP’s Perspective social media [3]. Notably, 19–35% of US and Aus- tralian HCPs have received a ‘‘friend’’ request from Social media raises privacy issues for HCPs as a patient via a social networking site, although few well as for patients [40]. As with all patient–HCP respond [2, 3]. Few of the US HCPs reported send- contact, patient confidentiality is paramount ing a ‘‘friend’’ request to a patient or family member both ethically and legally (e.g., policies for (1–5%) [2], although in a separate US study, some securing the privacy of individually identifiable HCPs reported making a conscious decision to health information are enshrined in the US ‘‘friend’’ or connect with patients on social net- Health Insurance Portability and Accountability worksinanattempttoencourageengagementand Act) [41], and confidentiality breaches can arise to appear approachable [39]. if fragments of information can be assembled from different sources. It is important to remember that certain information can be PRIVACY, CONFIDENTIALITY, accessed freely by everyone online; therefore, AND ETHICAL CONSIDERATIONS prudence dictates that the most secure privacy settings should be selected when communicat- Patient’s Perspective ing with patients and that these settings are updated regularly [4, 42, 43]. Although social Maintaining patient confidentiality and privacy media provides a platform that could is an important issue when considering social Neurol Ther (2018) 7:37–49 45 dramatically change the way that HCPs engage patient face-to-face. Although HCPs should be with patients, the boundary between HCPs’ compassionate and engage with patients, it is private and professional lives can become blur- imperative to maintain professional boundaries. red when using social media [44]. In the UK and The UK and US guidelines recommend that USA, guidelines exist to help HCPs to optimize HCPs should not accept ‘‘friend’’ requests; their use of social media, while ensuring that however, the advice is inconsistent [42, 43, 45]. professional and legal obligations are met and In addition, defamation law applies to interac- that patients receive appropriate protection tions via social media, so derogatory or personal [42, 43, 45]. Dr. Kantor noted that these guide- comments should be avoided [42, 43]. It is also lines highlight the need to maintain profes- important that HCPs are mindful of their online sionalism, patient confidentiality, and image and how it might reflect on them pro- appropriate patient–HCP relationships, as well fessionally: social media activity is often moni- as to be aware of legal issues (e.g., defamation, tored by others, including the press, especially as will be discussed) and conflicts of interest in public forums and on micro-blogging sites (Table 2). He also pointed out that it is essential such as Twitter [42, 43]. Although social media to apply the same medical values and principles provides the opportunity to share expertise and during online interactions as when meeting a information, caution should be exercised when providing personal advice online [43], and responding to questions sent via social media Table 2 Steps healthcare professionals can take to avoid could expose HCPs to legal action [6]. It is also some pitfalls of using social media [42–45] important to consider that users with limited Area Suggested actions social media experience are more likely to make mistakes than those accustomed to using it. Professionalism Apply medical ethical values and Such mistakes could have severe consequences principles at all times if patient privacy is unwittingly breached [46]. Protect your online image Be polite and respectful FUTURE POTENTIAL OF SOCIAL Be aware that social media can be MEDIA monitored by others Social media is helping patients with MS to Avoid defamatory comments become more informed about their diagnosis, Disclose any conflicts of interest and thus it is encouraging them to take greater responsibility for their own health care. These Patient Patient confidentiality is an ethical and ‘‘e-patients’’ are individuals who are equipped, confidentiality legal obligation enabled, empowered, and engaged in their own Limit access to online content health and healthcare decisions [8]. They are Use the most stringent privacy settings changing the relationships among HCPs and patients and demanding a more equal partner- available ship, with shared decision-making and respon- Be careful giving individual patients sibility. Social media will continue to drive the medical advice online cooperative approach of participatory medicine, with patients actively participating alongside Patient–HCP Maintain professional boundaries HCPs in all aspects of their own health care, relationship Avoid engaging in non-professional with the ultimate aim of improving outcomes relationships and patient satisfaction [8]. In the future, interfacing with electronic medical records and Be cautious of accepting ‘‘friend’’ monitoring disease management in real time requests will be made possible using mobile electronic HCP healthcare professional devices and the Internet. The role of social 46 Neurol Ther (2018) 7:37–49 media in these developments is unclear. Cur- traditionally passive role that patients used to rent guidelines recommend that social media is play. This change in behavior has made the not used for providing medical advice to indi- HCP–patient relationship more of an equal vidual patients, so wholesale replacement of partnership, with decision-making and respon- direct patient–HCP interaction seems unlikely. sibilities now shared between both parties. Use of these platforms also has potential to change dramatically the way HCPs engage with their FINAL THOUGHTS: ‘‘HOW SOCIAL patients and peers. However, there are a number MEDIA HAS CHANGED ME AS of important privacy, confidentiality, and ethi- cal issues that must be considered, which may A PATIENT’’ limit certain use of these platforms, especially by HCPs. Also, to maximize adoption by Access to the Internet and interaction via social patients and HCPs, it will be important to media has broadened horizons for patients, ensure that these technologies are accessible, empowering them not only in managing their cheap, and quick and easy to use. own treatment but also in helping and sup- porting others, and in contributing more actively to medical research. This is a sentiment echoed by Jeri. ACKNOWLEDGEMENTS ‘‘The Internet empowered me as a patient Editorial and medical writing support of the to become informed about my condition, manuscript and the journal’s article processing to consider my options and the opinions of charges were funded by Novartis Pharmaceuti- others, and to take charge of managing my cals Corporation. The authors acknowledge Ian disease in the best possible way for me. I Williams of Oxford PharmaGenesis Ltd (Oxford, realize everyone’s experience with MS and UK), who provided editorial and medical writ- medications is different, but the Internet ing support, and Kathleen Hawker, formerly of has been the single most powerful influ- Novartis Pharmaceuticals Corporation (East ence in my arsenal of tools to combat this Hanover, NJ, USA), who reviewed the article disease.’’ during the early stages of its development and ‘‘I use social media to meet others with MS, conducted the interview with Jeri Burtchell. In and to find ways to make a difference and addition, Novartis reviewed the final draft of the have a positive impact. Staying connected manuscript for scientific accuracy only. All in this way has given me hope for the named authors meet the International Com- future and has given my life purpose. It has mittee of Medical Journal Editors (ICMJE) cri- made having MS be more of a conduit and teria for authorship for this manuscript, take less of a burden. Without the Internet and complete responsibility for the integrity of the social media I am convinced I would be work as a whole, and have given final approval isolated, introverted, and miserable.’’ for the version to be published. Disclosures. Daniel Kantor has received CONCLUSIONS research support from Novartis and speak- ing/consulting honoraria, not related to this As identified by Jeri and Dr. Kantor, and across publication. Jeremy R. Bright is an employee of different countries in the supporting literature, Oxford PharmaGenesis Ltd. Jeri Burtchell has a wide range of benefits for MS participatory acted as a consultant for Janssen, Lilly, Louisi- medicine can be gained from the targeted use of ana Public Health Institute, Novartis, Rutgers the Internet and social media. The rise of the University, and Vanderbilt University, and has e-patient—an informed and empowered indi- received fees for speaking from ERT, Janssen, vidual who is actively involved in their own Lilly, and Novartis. She is the founder of healthcare management—is challenging the Neurol Ther (2018) 7:37–49 47 6. Ventola CL. Social media and health care profes- Partners in Research and Director of Healthi- sionals: benefits, risks, and best practices. Pharm Vibe, LLC. As an employee of HealthiVibe, LLC, Ther. 2014;39:491–520. she has worked on projects with many phar- maceutical companies, including Novartis. She 7. Society for Participatory Medicine. E-patients.net (blog). Guest post by Hugo Campos: a case for also serves on the patient advisory boards of autonomy and the end of participatory medicine. CureClick and MS SoftServe, Inc. http://e-patients.net/archives/2014/12/a-case-for- autonomy-and-the-end-of-participatory-medicine. Compliance with Ethics Guidelines. This html. 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The AMA code of medical ethics’ opinions on for most? in Social media: the way forward or a observing professional boundaries and meeting waste of time for physicians? by M DeCamp and professional responsibilities. Opinion 9.124—pro- AM Cunningham. J R Coll Phys Edinb. fessionalism in the use of social media. http:// 2013;43:318–22. 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 Participatory Medicine

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Medicine & Public Health; Internal Medicine; Neurology
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Abstract

Neurol Ther (2018) 7:37–49 https://doi.org/10.1007/s40120-017-0088-2 COMMENTARY Perspectives from the Patient and the Healthcare Professional in Multiple Sclerosis: Social Media and 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 participatory medicine and to improve com- ABSTRACT munication with and among patients. We con- sider both the benefits afforded to and the When faced with a diagnosis of multiple scle- potential pitfalls faced by HCPs when interact- rosis (MS), patients often turn to the Internet ing with their patients via these routes, and and social media to find support groups, read discuss potential concerns around privacy and about the experiences of other people affected confidentiality in the use of the Internet and by MS and seek their advice, and research their social media in the clinical context. Commu- condition and treatment options to discuss with nication online is driving the evolution of the their healthcare professionals (HCPs). Here, we patient–HCP relationship, and is empowering examine the use of social media and the Inter- patients to participate more actively in the net among patients with MS, considering its decision-making process relating to the provi- impact on patient empowerment and patient sion of their health care. participation in treatment decision-making and Funding Novartis Pharmaceuticals MS research. These themes are exemplified with Corporation. first-hand experiences of the patient author. We also explore the impact of the Internet and social media on the management of patients Keywords: Internet; Multiple sclerosis; Online; from the perspective of HCPs, including new Participatory medicine; Patient voice; Shared opportunities for HCPs to engage in decision-making; Social media; Web Enhanced content To view enhanced content for this article go to http://www.medengine.com/Redeem/ 86FCF0604435B798. INTRODUCTION D. Kantor (&) Individuals receiving a diagnosis of multiple Florida Atlantic University, Boca Raton, FL, USA sclerosis (MS) face many life-altering challenges. e-mail: info@KantorNeurology.com However, over the last decade, improved access J. R. Bright to high-quality information and the ability to TM Oxford PharmaGenesis Ltd, Oxford, UK share experiences with other MS patients through the Internet and social media have J. Burtchell HealthiVibe, LLC, Arlington, VA, USA helped patients become more knowledgeable about their condition and about MS research, J. Burtchell including their diagnosis, treatment options, Partners in Research, East Palatka, FL, USA 38 Neurol Ther (2018) 7:37–49 and clinical trials. This has allowed patients to Multiple Sclerosis Association of America’s manage their disease proactively and, in some Healthcare Advisory Council. The patient’s cases, has afforded the opportunity to influence perspective is provided by Jeri Burtchell, a clin- clinical research. As early as 2007, a survey of ical trials awareness activist, MS patient advo- 2390 Americans with MS reported Internet use by cate, founder of Partners in Research, and 93% of participants (compared with 75% of the Director of Patient Initiatives at HealthiVibe, general population), of whom 53% indicated LLC. These perspectives are drawn together, in that it had helped them to become their own MS the context of published research, by Jeremy advocate [1]. As well as being widespread among Bright, a medical writer at Oxford PharmaGen- patients, the use of social media among Western esis with a special interest in MS. This article healthcare professionals (HCPs) has dramatically also includes some of Jeri’s experiences since increased in recent years, rising from 42% of receiving an MS diagnosis in 1999, 3 months practicing physicians in 2010 [2] to almost 75% after the onset of symptoms. in 2013 [3]. Among HCPs, 65% use social media The patient’s perspective was provided as for professional reasons, mostly in professional follows: a Novartis employee drafted a set of networks and clinical practice, but also for questions for use in a subsequent interview with informing and helping patients [4–6]. the patient author (Jeri Burtchell). During the These developments have empowered patients interview, Jeri’s responses to these questions to act more in partnership with their HCPs in were recorded. Unedited and non-paraphrased determining what care they receive, shifting away quotes were taken directly from the recordings from a traditionally passive role to an active, self- and used as required throughout the manu- governing one, with participatory decision- script. The HCP’s perspective was provided making playing a key part in determining treat- directly by the HCP author, Daniel Kantor. To ment [7]. In this article, we aim to explore the the best of our knowledge, this ‘‘patient–HCP impact of virtually instant global access to infor- dyad’’ approach has not been used before to mation on the interaction between patients with explore patient and HCP perspectives regarding MS, the HCPs who treat them, and the MS com- the impact of the Internet and social media on munity. These interactions are examined in terms the interaction between members of the MS of participatory medicine, of the direction of MS community. Adopting this novel approach thus research, of the sharing of experiences among enabled us to gain detailed and direct insights patients, and of the privacy and ethical consider- into specific issues not previously reported. ations when using social media and the Internet The patient and HCP perspectives described in healthcare communications. in this article were provided by single individ- uals from the USA. As the insights yielded by this approach are specific to the authors’ per- METHODS sonal experiences, the generalizability of the findings may be limited as they may not be This article offers qualitative case study-based representative of those of the wider MS popu- insights from the patient and HCP authors, lation and other HCPs. In order to minimize both of whom are from North America. As in any bias, a separate literature search was con- our accompanying article, which examines the ducted to identify relevant articles that con- impact of social media and the Internet on textualized the themes identified by both the aspects of patient education, the HCP’s per- patient and HCP authors. Supporting published spective in this article is provided by an MS references and online resources relating to specialist, Daniel Kantor, MD, FAAN, Past Pres- Internet and social media use in MS were iden- ident of the Florida Society of Neurology, Pres- tified using MEDLINE and Google Scholar, with ident of the Medical Partnership 4 MS, Chief the search strings ‘‘multiple sclerosis [Title/Ab- Medical Correspondent for MSWorld, and an stract] AND social media [Title/abstract]’’ and active member of the Multiple Sclerosis Foun- ‘‘multiple sclerosis [Title/Abstract] AND Internet dation’s Medical Advisory Board and the [Title/Abstract]’’. Neurol Ther (2018) 7:37–49 39 Compliance with Ethics Guidelines role, following the instruction of their physi- cians with little input into the decision-making process. Jeri was diagnosed with MS in 1999, This article does not contain any new studies 3 months after the onset of symptoms. Below, with human or animal subjects performed by Jeri recalls what little involvement she had any of the authors. regarding the treatment she would receive. ‘‘At that second visit to my neurologist’s OVERVIEW OF KEY FINDINGS office, when he gave me the bad news, we discussed all the available treatment In exploring the impact that the Internet and options. They were all injectable drugs, social media have had on interactions between only one of which was not an interferon. members of the MS community, Jeri and Dr. This was the drug my doctor chose for me. Kantor’s perspectives could be grouped into We didn’t choose together because, in my four major themes: (1) participatory medicine eyes, he was the expert and knew best.’’ and the changing face of patient–HCP interac- tions; (2) promoting and fostering MS research; Jeri would typically have three or four (3) sharing experiences and interpersonal con- relapses annually for the first 7 years, and often tact; and (4) privacy, confidentiality, and ethical had to use a walker or a wheelchair for months considerations. In the following sections, we at a time. Despite asking if she could switch to a present Jeri and Dr. Kantor’s views on each of more effective treatment, her HCP said she these topics and contextualize them in terms of should remain on her current therapy. the available literature. Two further sections ‘‘When I asked my doctor about switching outlining the future potential of social media [treatment], I didn’t understand why he and concluding remarks from Jeri have also thought my drug was working when I was been included to provide additional informa- having bona fide relapses requiring steroid tion on this topic. use several times per year.’’ ‘‘At the time there were only four MS drugs PARTICIPATORY MEDICINE: and I was taking the only one that wasn’t CHANGING FACE OF PATIENT–HCP an interferon. He insisted I stay on the therapy I’d been on all along, reassuring INTERACTION me that my MS would be ‘so much worse’ if I weren’t taking it.’’ Participatory medicine has been defined as a model of cooperative health care that seeks to ‘‘I had no idea that I could challenge my achieve active involvement by patients, HCPs, doctor, or even that I could find a new one. caregivers, and others across the continuum of Since he was the only one in my town, I care on all issues related to an individual’s felt I had no choice. I was despondent that health [7, 8]. Participatory medicine is consid- I was relapsing so often and felt like things ered to be an ethical approach to care that may might never get any better.’’ help to improve outcomes, reduce medical Central to the success of participatory med- errors, increase patient satisfaction, and reduce icine is the dynamic between HCPs and the cost of care through partnership between patients. While physicians bring their training patients and their HCPs [7, 8]. and clinical expertise, patients bring their life experiences, skills, and resilience, their deep Patient’s Perspective investment in their long-term health, and a unique perspective on needs and priorities [9]. In the traditional model of biomedical care (one Effective patient–HCP partnerships build trust, of medical paternalism), HCPs hold the position help patients feel informed, in control, and of authority while patients assume a passive empowered, and promote shared decision- 40 Neurol Ther (2018) 7:37–49 making in effective and time-efficient consul- appointment subsequently discussed it with tations [10, 11]. Seven years after her initial their HCP [12]. This is especially surprising diagnosis, an opportunity arose for Jeri to given that patients within the 2011 North engage with a different HCP. American Research Committee on Multiple Sclerosis (NARCOMS) registry indicated that ‘‘In 2006 my neurologist had a stroke and I their most trusted information source was an was left without a doctor. I would wind up HCP, with 98% of patients reporting that they at my PCP’s [primary care physician’s] office trusted a physician ‘‘some’’ or ‘‘a lot’’ [13]. every time I had MS symptoms and he Dr. Kantor also noted how in recent years, finally convinced me in 2007 that I needed the importance of shared decision-making in to see a new neurologist in a nearby city.’’ patient–HCP communication has gained Jeri discussed the advantages and disadvan- increasing recognition, particularly for chronic tages of different treatments with her new diseases such as MS for which the treatments are neurologist. The interaction followed a partici- not curative. Indeed, a German study found patory model, and Jeri’s interaction with the that between 2001 and 2007, 80% of patients online MS community helped her to become with MS demanded autonomous roles in deci- more assertive in the management of her care. sions relating to their treatment [14]. Given that use of social media has almost certainly led to a ‘‘I didn’t want to take one of the interferon patient population that is well informed about medications (my only other option) due to current treatment options, it would be reason- the fear I’d developed based on the strong able to expect that this has resulted in patients feelings my former neurologist had challenging their HCP’s prescribing recom- regarding them, and also from reading so mendations more often and further influencing much from patients online who shared their practice patterns. Published evidence their ‘flu-like symptoms’ and feeling mis- examining the effects that social media may erable on the medication.’’ have had on the shared decision-making pro- ‘‘Before the Internet, when first diagnosed, cess is scant, but this is an area where more I depended on my neurologist. His opinion research would be valuable. was the final say about everything from use Although HCPs generally welcome a well- of steroids to physical therapy to which informed patient base, given that a better disease-modifying medicine I would use. understanding of treatment may lead to greater The Internet empowered me as a patient to adherence and patient engagement, Dr. Kantor become informed about my condition, to acknowledged that some HCPs may feel defen- consider my options and the opinions of sive when patients challenge their medical others, and to take charge of managing my knowledge or recommendations. He explained disease in the best possible way for me.’’ that although modern medicine is much less paternalistic than it was several decades ago, the HCP’s Perspective expectation that HCPs’ authority should be respected (if not revered) still lingers in some quarters. Dr. Kantor highlighted how clear, two-way Attempts have been made in the literature to communication is vital to foster successful quantify the influence of social media on the partnerships between patients and HCPs, patient–HCP relationship, albeit not specifically something that is also described in the literature relating to MS. In a multidisciplinary survey of [10, 11]. In a US survey of patients who pre- 232 Brazilian HCPs carried out in 2011–2012, sented for the first time at an MS clinic between 57% thought use of the Internet helped the 2003 and 2005, 82% of individuals performed patient–HCP relationship, but 28% thought it web-based searches in preparation for their ini- interfered with it, and 16% felt it had a negative tial consultation. Hence, it was perhaps sur- impact [15]. A small qualitative multidisci- prising that only 36% of those who had plinary survey of German HCPs, patients, and a gathered information before their first Neurol Ther (2018) 7:37–49 41 patient organization representative published appointment we discussed the pros and cons of being in a study, and we weighed in 2012 largely echoed these findings. Most patients from Germany continued to regard the options.’’ their HCP as the expert, but being a better- ‘‘So I took the informed consent home to informed patient made the relationship with read, and share with friends and family to their HCP more balanced, with patients get opinions on whether or not I should becoming more critical and interrogating rec- join.’’ ommendations made by their HCPs [16]. No German HCP reported feeling threatened or ‘‘I also tried to find anything online from a undermined by this shift in the relationship, patient perspective about participating in a clinical trial. All I could find was from the but some noted that consultations could be prolonged when patients attended their con- research side.’’ sultation ready-armed with a self-diagnosis Jeri took the decision, which was at the time based on Internet research [16]. unusual, to blog her experience of participating However, findings from UK and US articles in this trial. have shown that with HCPs becoming increas- ingly burdened by non-face-to-face commit- ‘‘My blog would come to be widely accep- ments (such as inordinate time spent obtaining ted as the first start-to-finish blog of a prior authorizations), a more engaged and self- clinical trial from a patient perspective. A educated (social media-educated) patient base pharmaceutical executive once dubbed me has the potential to help improve the efficiency the ‘godmother of the intersection of social media and research’.’’ of the delivery of care [4, 17, 18], perhaps by enabling patients to ask more informed ques- US-based social media and websites (e.g., tions about their disease, thus saving some of PatientsLikeMe) are now widely used by the time that HCPs need to commit to educat- patients with MS not only to find information ing patients about their disease process and on clinical trials, such as how to participate in treatment options. them and study results, but also to communi- cate their on-trial experiences [19–22]. Further- more, this avenue of communication affords PROMOTING AND FOSTERING patients the opportunity to provide input on MULTIPLE SCLEROSIS RESEARCH trial design. Indeed, this is also something Jeri has been actively involved in. Patient’s Perspective ‘‘Currently I work for HealthiVibe, LLC, a company focused on bringing the patient Before the availability of the Internet, and even perspective to clinical trial design and until quite recently, patients would probably patient-facing initiatives so our pharma- have learnt about a trial of a new drug from ceutical clients can design studies and newsletters (as Jeri did in 2006–2007), or from programs that are more meaningful and their HCP. patient-friendly.’’ ‘‘I was still learning about MS from offline Concerns have been raised in the literature sources at this time and when I received a that large numbers of patients interacting via MOMENTUM magazine from the National social media during a clinical trial could have MS Society talking about a new pill form of the unwanted consequence of breaking the treatment still in clinical trials and blinding of a study [20]. Again, this was some- recruiting, I decided to ask my new doctor thing that Jeri identified with and had also about it. My new neurologist was Dr. experienced directly. Daniel Kantor who, at the time, was lead investigator for the TRANSFORMS trial at ‘‘The question of possible unblinding due the University of Florida. At my first to patients finding each other via social 42 Neurol Ther (2018) 7:37–49 media has become a real issue. A few of us disease-modifying treatments [24]. Social media who remained in contact did reach out to could also be used by patients for real-time each other once we’d been unblinded to reporting of adverse events [25]. see if the others knew. We were all correct in our suspicions. But we all agreed that SHARING EXPERIENCES regardless of having found each other, it’s AND INTERPERSONAL CONTACT only natural to wonder which arm you are in and to guess—whether silently to your- Patient’s Perspective self, or out loud to family, friends, or those on social media. Together with a handful of blog followers who had joined the clin- Jeri was a frequent user of online forums, and as ical trial, I created a Yahoo! group to have a time progressed, she began to build up her own more private place for us to gather and network of trusted members and online sources. commiserate. In order to gain access, ‘‘After posting on forums for a while, I members had to prove they were in the began to privately message other members trial by sending me a photo of their medi- and online relationships—some of which cation bottle. While some people did want continue to this day—began. It was in this to talk about possible side effects and try to way that we developed a network of trus- figure out if they were on the real drug or ted sources within the larger MS forums, not, mostly we talked about normal things and we would share links to information, like family and jobs.’’ or other forums.’’ It is evident that social media provides an HCP’s Perspective invaluable channel of communication and interaction for people with disabilities [26] and There are several published examples of the has the potential to relieve social isolation and successful use of social media to recruit partici- improve quality of life by connecting patients pants to MS studies, including a US trial exam- to the wider world. For example, among indi- ining the adverse effects of switching treatment viduals in the 2011 NARCOMS registry, 61% and a large Australian study assessing factors used the Internet for social networking [13]. The that may contribute to fatigue [20, 21, 23]. In Multiple Sclerosis International Foundation 2012, the US Food and Drug Administration (MSIF) 2014 global survey examining technol- also approved a ‘‘crowdsourced’’ protocol for an ogy use and MS also revealed that social media MS trial that was developed with an online was used for peer support and for building an community of patients, HCPs, and researchers MS community, with more than one-third [22]. Dr. Kantor also noted that in addition to (38%) keeping in touch with other people with pharmaceutical company and MS patient MS [27]. Jeri found the ‘‘connecting’’ aspects of advocacy websites that act as gateways to clini- social media particularly valuable, and rela- cal trials, patients with MS write blogs that offer tionships within her network strengthened as a advice on accessing clinical trials, and MS direct result of being able to connect with each community websites promote participation in other instantly. studies (e.g., http://partnersinresearch.org, http://mymsteam.com) and encourage partici- ‘‘During the time I was blogging, I had my pants to share their research experience (http:// posts set up to automatically show up on projectdreamnow.org, http://patientslikeme. Facebook and Twitter. Although I had used com). Indeed, in 2009 an online community Facebook to some degree, I had never used of US patients with MS was used to develop a Twitter very much.’’ self-report questionnaire in order to quantify ‘‘When I got a smartphone in 2011, how- adherence and to identify any barriers to ever, I became even more involved in achieving adherence that are specific to MS social media. The apps for Facebook, Neurol Ther (2018) 7:37–49 43 Twitter, and LinkedIn allowed me to con- HCP’s Perspective nect to others even when I wasn’t at my computer, which resulted in a much dee- Rather than being spectators to their patients’ per, richer social media experience. I could use of health-related information on the Inter- share with others instantly instead of net and social media, Dr. Kantor outlined how waiting to blog once I got home.’’ HCPs have become involved in actively using these channels (a number of reasons that might ‘‘Because I had cultivated a group of friends motivate HCPs to have a social-media presence whose opinions I trusted, the feedback was are summarized in Table 1)[33]. Studies have meaningful and almost always instant.’’ shown that social networks afford HCPs the Examples of the kinds of social networks that opportunity to communicate with online have been developed for patients with MS patient communities, and share health mes- include http://mymsteam.com. This US forum sages that are likely to resonate with patients was set up specifically to allow patients to talk and be adopted by them [6], while simultane- to each other about the day-to-day realities of ously responding to their requests for accessible, living with MS, sharing practical tips and per- interactive, two-way communication [34]. Evi- sonal experiences, as well as providing support dence suggests that social media may also and advice to each other on issues that can only improve patient outcomes and reduce health- be answered by someone living with the con- care resource use [35]. Indeed, data from a 2015 dition [28]. During a presentation at the 2015 systematic review and meta-analysis found that conference of the European Committee for social networking site interventions in Aus- Research and Treatment in Multiple Sclerosis, it tralia, the UK, and the USA had a statistically was noted how sharing experiences on social significant positive effect on the promotion of media helps patients feel less alone, giving them health-related behavioral change [36]. hope and providing an opportunity to talk Indeed, US HCPs may use social media, such about things they felt were too embarrassing or as Twitter and Facebook, for the purposes of stressful to share with close friends and family enhancing communication with their patients (e.g., issues with incontinence) [29]. The Inter- and the wider healthcare community, including net also provides opportunities to explore providing patient education and disseminating patients’ experiences of living with MS and of public health information [37]. Across regions, different treatment options, such as those in the the most widely used channels tend to be online MS in America study, as reported on the http:// communities that allow for catching up on the MultipleSclerosis.net website [30]. latest news and developments, and networking Social media has also transformed how and communicating with colleagues on patient patients and HCPs communicate with each issues [5, 38]. With this in mind, MS HCPs could other, especially in regions that have highly set up a Facebook page or Google? circle specif- developed healthcare systems, such as Canada, ically to distribute disease-based information and Europe, Israel, and the USA. Traditionally, HCPs andpatientswithMSinthese regions Table 1 Reasons why physicians use social media [33] have communicated and exchanged informa- tion via face-to-face contact during clinic visits To connect To be challenged as part of routine follow-up. However, as more and more patients use computers and mobile To engage To be supported electronic devices to access health-related To inform To lead information, they are also becoming more To reflect To learn interested in using digital technologies to complement face-to-face communications To share To inspire with their HCPs [31, 32]. 44 Neurol Ther (2018) 7:37–49 guidance to patients, and to provide links to sites media in healthcare settings [40], and this may with other relevant information [4, 37]. Such influence how patients engage with and benefit platforms also provide an opportunity to post from social media. This was a particular concern videos and newsletters and to conduct web-based for Jeri. seminars [6]. Institutions can play a valuable role ‘‘With more and more platforms becoming in using social media as a vehicle for patient available for patients to connect, I believe education, but as described in the accompanying security and privacy are being better article on patient education, institutional use of addressed.’’ social media is not always directed in this way nor is it always managed by individuals with knowl- ‘‘The privacy of Facebook groups was hard edge of patient needs in MS. to understand for some at first. When their In terms of patient–HCP interaction, Dr. Kantor posts would appear in their own Newsfeed explained that there is a need to consider the dif- outside of the group, people became ferences between using social media to disseminate alarmed and raised the question of privacy information to large groups of patients and using it with the group admins [administrators]. I to interact directly with an individual patient. believe nowadays Facebook users have a Evidence suggests that the communication better understanding of how privacy works options offered by social media may help to pro- within groups. That’s not to say there mote efficient use of resources and staff time [4]. aren’t strong suspicions among patient However, despite a rapid increase in its use, many members of these groups that there are HCPs are reluctant to incorporate social media into ‘plants’ who are members of pharmaceuti- routine clinical practice owing to uncertainty sur- cal companies trying either to learn about rounding ethical and legal obligations, public the purpose of any given group, or to cor- access [2, 3], data security, and privacy regulations rect misinformation about their product, (e.g., the Health Insurance Portability and or even to speak badly of a competitor’s Accountability Act), managing the expectations of drug. The group admins try to stay on top social media-savvy patients, and the lack of reim- of these types of accounts, researching bursement for time spent. Indeed, results from a other activity to gauge whether or not the survey of Australian HCPs published in 2015 account is that of a real patient.’’ revealed that 66% of respondents were hesitant to engage fully in communications with patients via HCP’s Perspective social media [3]. Notably, 19–35% of US and Aus- tralian HCPs have received a ‘‘friend’’ request from Social media raises privacy issues for HCPs as a patient via a social networking site, although few well as for patients [40]. As with all patient–HCP respond [2, 3]. Few of the US HCPs reported send- contact, patient confidentiality is paramount ing a ‘‘friend’’ request to a patient or family member both ethically and legally (e.g., policies for (1–5%) [2], although in a separate US study, some securing the privacy of individually identifiable HCPs reported making a conscious decision to health information are enshrined in the US ‘‘friend’’ or connect with patients on social net- Health Insurance Portability and Accountability worksinanattempttoencourageengagementand Act) [41], and confidentiality breaches can arise to appear approachable [39]. if fragments of information can be assembled from different sources. It is important to remember that certain information can be PRIVACY, CONFIDENTIALITY, accessed freely by everyone online; therefore, AND ETHICAL CONSIDERATIONS prudence dictates that the most secure privacy settings should be selected when communicat- Patient’s Perspective ing with patients and that these settings are updated regularly [4, 42, 43]. Although social Maintaining patient confidentiality and privacy media provides a platform that could is an important issue when considering social Neurol Ther (2018) 7:37–49 45 dramatically change the way that HCPs engage patient face-to-face. Although HCPs should be with patients, the boundary between HCPs’ compassionate and engage with patients, it is private and professional lives can become blur- imperative to maintain professional boundaries. red when using social media [44]. In the UK and The UK and US guidelines recommend that USA, guidelines exist to help HCPs to optimize HCPs should not accept ‘‘friend’’ requests; their use of social media, while ensuring that however, the advice is inconsistent [42, 43, 45]. professional and legal obligations are met and In addition, defamation law applies to interac- that patients receive appropriate protection tions via social media, so derogatory or personal [42, 43, 45]. Dr. Kantor noted that these guide- comments should be avoided [42, 43]. It is also lines highlight the need to maintain profes- important that HCPs are mindful of their online sionalism, patient confidentiality, and image and how it might reflect on them pro- appropriate patient–HCP relationships, as well fessionally: social media activity is often moni- as to be aware of legal issues (e.g., defamation, tored by others, including the press, especially as will be discussed) and conflicts of interest in public forums and on micro-blogging sites (Table 2). He also pointed out that it is essential such as Twitter [42, 43]. Although social media to apply the same medical values and principles provides the opportunity to share expertise and during online interactions as when meeting a information, caution should be exercised when providing personal advice online [43], and responding to questions sent via social media Table 2 Steps healthcare professionals can take to avoid could expose HCPs to legal action [6]. It is also some pitfalls of using social media [42–45] important to consider that users with limited Area Suggested actions social media experience are more likely to make mistakes than those accustomed to using it. Professionalism Apply medical ethical values and Such mistakes could have severe consequences principles at all times if patient privacy is unwittingly breached [46]. Protect your online image Be polite and respectful FUTURE POTENTIAL OF SOCIAL Be aware that social media can be MEDIA monitored by others Social media is helping patients with MS to Avoid defamatory comments become more informed about their diagnosis, Disclose any conflicts of interest and thus it is encouraging them to take greater responsibility for their own health care. These Patient Patient confidentiality is an ethical and ‘‘e-patients’’ are individuals who are equipped, confidentiality legal obligation enabled, empowered, and engaged in their own Limit access to online content health and healthcare decisions [8]. They are Use the most stringent privacy settings changing the relationships among HCPs and patients and demanding a more equal partner- available ship, with shared decision-making and respon- Be careful giving individual patients sibility. Social media will continue to drive the medical advice online cooperative approach of participatory medicine, with patients actively participating alongside Patient–HCP Maintain professional boundaries HCPs in all aspects of their own health care, relationship Avoid engaging in non-professional with the ultimate aim of improving outcomes relationships and patient satisfaction [8]. In the future, interfacing with electronic medical records and Be cautious of accepting ‘‘friend’’ monitoring disease management in real time requests will be made possible using mobile electronic HCP healthcare professional devices and the Internet. The role of social 46 Neurol Ther (2018) 7:37–49 media in these developments is unclear. Cur- traditionally passive role that patients used to rent guidelines recommend that social media is play. This change in behavior has made the not used for providing medical advice to indi- HCP–patient relationship more of an equal vidual patients, so wholesale replacement of partnership, with decision-making and respon- direct patient–HCP interaction seems unlikely. sibilities now shared between both parties. Use of these platforms also has potential to change dramatically the way HCPs engage with their FINAL THOUGHTS: ‘‘HOW SOCIAL patients and peers. However, there are a number MEDIA HAS CHANGED ME AS of important privacy, confidentiality, and ethi- cal issues that must be considered, which may A PATIENT’’ limit certain use of these platforms, especially by HCPs. Also, to maximize adoption by Access to the Internet and interaction via social patients and HCPs, it will be important to media has broadened horizons for patients, ensure that these technologies are accessible, empowering them not only in managing their cheap, and quick and easy to use. own treatment but also in helping and sup- porting others, and in contributing more actively to medical research. This is a sentiment echoed by Jeri. ACKNOWLEDGEMENTS ‘‘The Internet empowered me as a patient Editorial and medical writing support of the to become informed about my condition, manuscript and the journal’s article processing to consider my options and the opinions of charges were funded by Novartis Pharmaceuti- others, and to take charge of managing my cals Corporation. The authors acknowledge Ian disease in the best possible way for me. I Williams of Oxford PharmaGenesis Ltd (Oxford, realize everyone’s experience with MS and UK), who provided editorial and medical writ- medications is different, but the Internet ing support, and Kathleen Hawker, formerly of has been the single most powerful influ- Novartis Pharmaceuticals Corporation (East ence in my arsenal of tools to combat this Hanover, NJ, USA), who reviewed the article disease.’’ during the early stages of its development and ‘‘I use social media to meet others with MS, conducted the interview with Jeri Burtchell. In and to find ways to make a difference and addition, Novartis reviewed the final draft of the have a positive impact. Staying connected manuscript for scientific accuracy only. All in this way has given me hope for the named authors meet the International Com- future and has given my life purpose. It has mittee of Medical Journal Editors (ICMJE) cri- made having MS be more of a conduit and teria for authorship for this manuscript, take less of a burden. Without the Internet and complete responsibility for the integrity of the social media I am convinced I would be work as a whole, and have given final approval isolated, introverted, and miserable.’’ for the version to be published. Disclosures. Daniel Kantor has received CONCLUSIONS research support from Novartis and speak- ing/consulting honoraria, not related to this As identified by Jeri and Dr. Kantor, and across publication. Jeremy R. Bright is an employee of different countries in the supporting literature, Oxford PharmaGenesis Ltd. Jeri Burtchell has a wide range of benefits for MS participatory acted as a consultant for Janssen, Lilly, Louisi- medicine can be gained from the targeted use of ana Public Health Institute, Novartis, Rutgers the Internet and social media. The rise of the University, and Vanderbilt University, and has e-patient—an informed and empowered indi- received fees for speaking from ERT, Janssen, vidual who is actively involved in their own Lilly, and Novartis. She is the founder of healthcare management—is challenging the Neurol Ther (2018) 7:37–49 47 6. Ventola CL. Social media and health care profes- Partners in Research and Director of Healthi- sionals: benefits, risks, and best practices. Pharm Vibe, LLC. As an employee of HealthiVibe, LLC, Ther. 2014;39:491–520. she has worked on projects with many phar- maceutical companies, including Novartis. She 7. Society for Participatory Medicine. E-patients.net (blog). Guest post by Hugo Campos: a case for also serves on the patient advisory boards of autonomy and the end of participatory medicine. CureClick and MS SoftServe, Inc. http://e-patients.net/archives/2014/12/a-case-for- autonomy-and-the-end-of-participatory-medicine. Compliance with Ethics Guidelines. This html. 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Neurology and TherapySpringer Journals

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