Abstract
This study examines how a medically contested procedure for people living with multiple sclerosis was framed by the news media and challenged by user-generated Facebook content. While expected narrative patterns ensued (advocates being positive and the scientific community being cautious), embedded were collective action oppositional frames that forced shifts in scientific and policy decisions that defied standard evidentiary support in Canada. Medical experts and researchers need to engage in more effective science communication about the nature of the research process and engage affected health communities more in the research agenda, particularly for conditions characterized by considerable unmet need.
Introduction
Novel therapies promising to address unmet therapeutic needs attract public attention; a context that fits multiple sclerosis (MS) perfectly. MS is a chronic disease of the central nervous system, globally affecting over 2 million persons, with a high prevalence in Canada (Thorpe et al., 2015). As a physically and cognitively disabling disease, MS is the major cause of nontraumatic disability among young adults in the Western developed world (Browne et al., 2014). Disease-modifying therapies are only modestly effective, prompting some people with MS (commonly abbreviated as pwMS) to try anything (Snyder, Adams, Crooks, Whitehurst, & Vallee, 2014).
In 2009, an Italian vascular surgeon, Paolo Zamboni, proposed that MS was a vascular disorder affecting the veins. Zamboni hypothesized that narrowed or blocked internal jugular and azygous veins prevent outflow of blood from the central nervous system, a condition he referred to as chronic cerebrospinal venous insufficiency (CCSVI), leading to deposition of iron in the brain and consequently the development of MS (Zamboni et al., 2009). Based on an unblinded clinical trial in 65 pwMS, he asserted that the symptoms of MS could be improved through venous angioplasty, later dubbed by the news media as “liberation therapy.”
Venous angioplasty is controversial because scientists have been unable to replicate the association between CCSVI and MS (Doepp, Paul, Valdueza, Schmierer, & Schreiber, 2010), and subsequent randomized clinical trials have also failed to show any benefit of venous angioplasty for pwMS (Cardaioli et al., 2016; Traboulsee et al., 2014). As an unproven therapy, it is not available in Canada nor is it a publicly reimbursed health service for people who access it outside Canada. Based on anecdotal evidence in the traditional and social media, pwMS travelled elsewhere for liberation therapy (Pullman, Zarzeczny, & Picard, 2013; Snyder et al., 2014). The CCSVI hypothesis and liberation therapy attracted unprecedented news media interest, but more so in Canada than elsewhere with high rates of MS (Chafe, Born, Slutsky, & Laupacis, 2011).
Media Presentations of Medically Contested Health Information: News Media Versus Social Media
The news media is important for disseminating health information to the public (Gasher et al., 2007) even though its coverage of positive medical breakthroughs does not keep pace with subsequent research (Gonon, Konsman, Cohen, & Boraud, 2012; Ioannidis, 2005). While radio, television and newspapers remain the major source of scientific information for 40% of the U.S. general public (W. Chang, Bank, & Scott, 2014), the burgeoning of social media, like Facebook (Davis, Anthony, & Pauls, 2015; Vera et al., 2012) and YouTube (Ghahari & Forwell, 2016), have provided a platform for medical information, social support, and a forum for discussion.
As communicators of mediated information the traditional news media industry help to shape which sources and messages are privileged in a story (Driedger, 2008). Through media framing, journalists emphasize how issues and events are to be presented and interpreted (Entman, 1993; Scheufele, 1999). Positive or negative framing of health services can influence consumers’ cognitions, intentions, and dispositions toward them (Mason & Wright, 2011). Low-risk medical procedures with positively framed messages tend to encourage medical tourism, whereas higher risk procedures may be negatively framed and increase consumers’ need for information about harms and benefits (C. Chang, 2007). Moreover, news media presentations of medical procedures that primarily promote gain-frames over loss-frames (i.e., greater emphasis on the benefits vs. adequate presentation of the risks) have been signaled as instances where credible risk communicators need to engage more effectively with news media organizations to counteract insufficiently balanced coverage of medical procedures (Muzyka, Thompson, Bombak, Driedger, & Lorway, 2012).
Capacity is shifting, however, for groups, organizations, and individuals to challenge, shape, and contest dominant traditional media presentations through user-generated content via social media, contributing to the “digitally engaged patient” (Lupton, 2013). Social media sites provide a level of anonymity that may encourage people to present sensitive information about their experiences in accessing health services abroad (Peterson, MacGregor, & Munsie, 2016; Pfeil & Zaphiris, 2010). These disclosures help others to make decisions about such health services (Ozan-Rafferty, Johnson, Shah, & Kursun, 2014). While the news media often presents more than one side of an issue, those who shape content in social media do not have that goal (Driedger & Garvin, 2016). Social media networks document pwMS’ various medical tourism experiences (Rafferty & Grey, 2014), but often any negative content targets specific facilities or physicians as opposed to safety concerns (Montemurro, Porcnik, Heden, & Otte, 2015).
Most media studies on medical tourism have focused primarily on origins and destinations (Imison & Schweinsberg, 2013), cosmetic and bariatric surgeries (Turner, 2012) and health care globalization more broadly (Mainil, Platenkamp, & Meulemans, 2011). Within the context of contested medical procedures, stem cells have received considerable focus. Media portrayals of stem cell therapies have typically only presented benefits as opposed to risks, creating “communities of hope,” despite the absence of evidence supporting its clinical use (Peterson et al., 2016). Of these, most examine news media (Caulfield & McGuire, 2012; Zarzeczny, Rachul, Nisbet, & Caulfield, 2010), some look at Twitter (Kamenova, Reshef, & Caulfield, 2014) and clinic websites offering such therapies (Ogbogu, Rachul, & Caulfield, 2013), comparisons of news and readers’ comments (Rachul & Caulfield, 2015), or social media communication (Peterson et al., 2016). Moving beyond stem cells is Ghahari and Forwell’s (2016) study of pwMS’ experiences with liberation therapy through before and after YouTube videos. They found that YouTube videos provided uncritical support for CCSVI treatment often as “not a miracle but worth trying” given the individual nature of MS (Ghahari & Forwell, 2016, p. 53), and concluded that researchers, care providers, and government decision makers need to engage different channels like social media to provide reliable health communication.
However, despite sharing many similar tropes in media framing of stem cell research—hope versus hype—the media coverage of a treatment to open hypothesized “blocked” veins in pwMS created a social and political storm that differed greatly from portrayals of stem cell therapies. Nonetheless, while social media provide uncharted territory for shaping a narrative discourse, traditional news media portrayals remain an effective battle-ground in applying public pressure to change policy responses, as observed for the CCSVI and liberation therapy issue in Canada. Specifically, the language invoked by pwMS, whether through user-generated content or as represented through news media, enabled them to galvanize into a broader, more identifiable social movement that emphasized collective action (Benford & Snow, 2000), forcing government and researchers to respond differently. Collective action frames provide an action-oriented function to social movements that generates new, and challenges existing, interpretive frames such that “movement actors are viewed as signifying agents actively engaged in the production and maintenance of meaning for constituents, antagonists, and bystanders or observers” that legitimizes their activities (Benford & Snow, 2000, p. 613). Inherent to this process are core definitional tasks where a group aims to promote a shared understanding of a situation in need of change, makes attributions of blame, identifies alternatives, and collectively urges action. These tasks operate through boundary work (Gieryn, 1999; Hilgartner, 2000) and adversarial framing (Gamson, 1995). Examining the issue through a collective action frame perspective enables a more thorough examination of “meaning work” as different stakeholders seek to control the “problem definition” and ultimately the type of policy or other solutions that will naturally follow (Stone, 2012). Gamson (1995) further argues that collective action frames include three components: injustice, agency and identity. These components, when properly marshalled, can create emotionally laden notions of injustice, developing an “us” collective empowering people as agents of change, in opposition to a “them” grouping characterized by different values and interests. Although what transpired in the Canadian CCSVI sociopolitical context fails standard definitions of a social movement in terms of organization and structure (cf. Johnston & Klandermans, 1995), using this lens offers a mechanism to understand why pwMS seemed more successful in challenging the status quo for evidence-informed policy decisions based on standard scientific protocols.
Framing: The Media Effects Elephant
Framing has long preoccupied research foci for communication scholars. Due to disciplinary epistemologies, two very different, and unrelated, operationalizations of framing have emerged, albeit recognizing that more nuanced critiques of framing abound (Perri 6, 2005). Equivalency framing, based in psychology, examines how otherwise logically equivalent information is manipulated to evaluate if there is an applicability effect in the interpretive schema called upon to process that information. Emphasis framing, based in sociology, examines what information is presented to evaluate if there is an accessibility effect, or salience, in garnering an audience’s attention. From a media effects perspective, emphasis framing is best suited to examining issues of agenda-setting and priming, whereas equivalency framing is best suited to the actual study of framing effects with its focus on the impact of specific manipulations within a communication text on how individuals process information (Cacciatore, Scheufele, & Iyengar, 2016). The problem lies in the conflated overuse of the term framing, which Scheufele and Iyengar (2017) rightly argue needs precision.
This case study is not about specific media effects on audience reception. Rather, we examine how elite and nonelite sources and journalists mediate the consumption of controversial science, against how user-generated social media content challenges standard ethical norms for balanced or objective reporting (Dunwoody, 1999). We interrogate how different actors contest the privileged discourse of science as the arbiter for medical treatments through oppositional frames of injustice and rights. As a retrospective analysis of a naturalistic case, using a sociological collective action framing lens, our study would be characterized by Scheufele and Iyengar (2017) as emphasis framing. However, we contend that emphasis framing studies can provide useful insights for equivalency framing scholars to examine the interaction of naturally occurring competing discourses, for future experimental studies, particularly when the crux of the issue under study is one of power over definitional control: providing only evidence-informed therapeutic options versus how medical treatment, and even the study of medical science, itself, is contested.
Hence, using a collective action lens, we examine oppositional frames regarding “promising therapies” using traditional news media and social media. To be clear, we are not arguing there is a causal association between social and news media framings, but rather, examining social media against news media framing activities offers a useful proxy for the type of political and social pressure exerted by a group of highly motivated individuals seeking control over their health and access to treatments. We contend that this type of medical controversy will repeat itself for other diseases with unmet therapeutic needs. Consequently, it is important to understand how health professionals, scientific researchers, and policy makers may need to change their communication strategies moving forward.
Method
We analyzed traditional print news media stories from two Canadian national and eight regional daily newspapers, including one national televised documentary on the topic, and content from social media, specifically Facebook. We retrieved newspaper stories using the ProQuest Canadian Newsstand and Major Dailies database because it is the best alternative to other e-resource databases available in Canadian academic institutions (Driedger & Weimer, 2015). We used “liberation” and “multiple sclerosis” as keywords because they yielded more potentially relevant stories to assess for inclusion than did “CCSVI,” “liberation therapy,” “liberation treatment,” or “liberation procedure” when paired with “multiple sclerosis” (Driedger & Weimer, 2015). For inclusion, the story needed to be substantively about MS, CCSVI, and liberation therapy, excluding stories where the issue was not the primary focus. We only considered English language news stories and chose the October 1, 2009 to October 31, 2013 period because it encompassed the introduction of liberation therapy, the Canadian government’s decision not to fund clinical trials, and its subsequent reversal. We sampled the major regional and national newspapers as identified by circulation (Newspapers Canada, 2013). Of 520 possible print media stories on the issue, 378 news stories were analyzed.
Characteristics of Facebook Pages Discussing CCSVI.
Note. CCSVI = Chronic cerebrospinal venous insufficiency; MS = multiple sclerosis.
As social media data are increasingly used in medical tourism research (Ozan-Rafferty et al., 2014), we confined our examination to Facebook because it remains the most popular platform (Duggan, Ellison, Lampe, Lenhart, & Madden, 2015; Duggan, Smith, & Pew Research Center, 2014; Greenwood, Perrin, & Duggan, 2016). The Facebook data augmented the news media data set by offering a closer proxy to the perspectives of pwMS not shaped by external forces (i.e., news media norms).
Different keywords were necessary for Facebook. Terms like multiple sclerosis with liberation or liberation therapy, yielded very little; only CCSVI located several Facebook pages. As both a reflection of activity, and manageability, we selected pages with a minimum of 2,000 likes/followers as being distinct from the next highest frequent grouping of pages with 500 or even 100 likes/followers. We specifically sampled posts from Facebook pages that coincided with major peaks in traditional news media story coverage (i.e., ⩾3 in a given month in ⩾75% of the newspaper sources) that followed major moments in the unfolding of the CCSVI issue. We also included posts from September to October 2013 to identify posting activity at the end of our news media date coverage.
Because we use an interpretive analysis, instead of automated text analysis programs, we selected a proportional sample each of positive, negative, and neutral posts from multiple categories when available: personal testimonials, patient questions about CCSVI/liberation therapy, personal opinion/commentary on CCSVI/liberation therapy or policy decisions regarding the procedure, satirical cartoon images, fundraising requests, e-mail correspondence, petitionary requests, patient updates, and links to traditional news media stories, peer-reviewed studies, and conference proceedings. When large numbers of positive or negative posts pertained to the same issue repeating similar sentiments, only a proportional one-third sample set were selected. When we identified duplicate or near-identical posts, only one was included. We excluded Facebook posts unrelated to CCSVI and liberation therapy. We included 893 posts/comments from the sampled Facebook pages for analysis.
Data Analysis
The data were imported into NVivo™ 10, a qualitative data management software program for analyzing textual data (Bazeley & Jackson, 2013). We used a thematic analysis process informed by a media framing interpretative lens. Thematic analysis involves identifying descriptive content from a data set or text which is categorized for more interpretative analysis (Fereday & Muir-Cochrane, 2006). We descriptively coded news story and social media frames according to iteratively developed definitions: adversarial/hype, wait and see, hope, miracle/liberation, urgency/desperation, and rights. Adversarial/hype depicted content whereby people were being pitted against each other (e.g., when pwMS and doctors strongly disagreed over the efficacy of liberation therapy), or where the perceived benefits and/or risks (depending on perspective) were being uncritically portrayed. Wait and see captured instances where people expressed hope for the hypothesis, but tempered their enthusiasm by a need to wait for scientific study into the efficacy of procedure. Hope captured positive sentiments of the potential the therapy offered for pwMS. Liberation/miracle differed from the hope theme in that a story or post made liberation therapy sound extraordinary or a salvation from all problems caused by MS; people are literally being “liberated” from their disease, almost suggesting a cure. By contrast, the urgency/desperation theme, while enthusiastic toward liberation therapy, equally emphasized that clinical trials to evaluate its efficacy had to begin immediately, or that pwMS should/could not wait for research trials and that governments needed to fund the therapy immediately before a person’s disease progressed further. The rights theme captured content where people felt it was their right to have immediate access to the diagnostic scans necessary to assess if someone had a venous blockage, even if they had to wait for the procedure to be publicly funded. This theme also included the frustrations of pwMS having embarked on medical tourism to undergo the procedure, not having access to follow-up scans or care managed in their home country, as well as references to non-MS people getting angioplasty (for very different conditions in arteries, not veins), so why not pwMS.
Three people conducted the analysis: the lead author (with over 15 years’ experience as an independent qualitative scholar and the study lead), the second author (a master’s student) and a hired research assistant (a PhD, but a novice with this type of analysis). We independently read 5 to 10 news stories from each news media outlet (i.e., roughly 50-100 stories in total) to develop our provisional coding and iteratively compared our analysis and coding definitions after each set was completed until no new themes were identified for descriptive content. The same process was followed for Facebook posts. Before the second author coded the balance of news stories, and the research assistant coded the balance of the Facebook posts, we selected a further sample of 10 stories and 20 Facebook posts to systematically test the code book. We achieved a 90% reliability rate of agreement, above recommended levels (Miles & Huberman, 1994) before the respective data sets were systematically coded. Uncertainty about any coding decisions was resolved through discussion. For the collective action frame analysis, the lead author undertook a secondary coding of the data set. This required a close reading of each thematic category, to assess appropriateness for grouping into collective action frames of injustice, agency, and identity per Gamson (1995). Any instance where the lead author felt lines of text had been misquoted, it was recoded into its appropriate category. Combined, this ensured quality in the more detailed analysis presented below.
Results
We organized results based on three evolutionary phases coinciding with major moments in the Canadian context. Phase 1 (November 2009–August 2010) encompasses the “push period” when CCSVI and liberation therapy were introduced to the general public, and where pwMS were positioned as strong advocates for research and the immediate availability of the procedure in Canada. Phase 2 (September 2010–May 2011) marks the period where the Canadian federal and some provincial governments decided not to fund clinical trials into the procedure based on the recommendation of a national panel of experts convened to examine the evidence. This period effectively captures the mounting “pressure” that pwMS and their advocates applied against this decision, particularly when some provincial jurisdictions had already funded some form of related research. Phase 3 (June 2011–October 2013) represents the beginning “trials” phase, where the federal government reversed its decision and provided funding for clinical trials. This period also covers the controversy regarding the submission and peer review of the randomized control trials to take place, including their delay, and early results from two notable Canadian studies casting serious doubts on any association between CCSVI and liberation therapy. We begin with an overview of the analysis of the primary data sources before focusing on the shifting prominence of the different collective action frames that dominated.
CTV W5 Televised Documentary
This documentary, titled “The Liberation Treatment: A Whole New Approach to MS,” was characterized as a “defining moment” (Woodhull & Snyder, 1998, p. 31) for the CCSVI and liberation therapy debate, particularly in Canada. It first aired on November 21, 2009. The documentary described liberation therapy as a “stunning medical discovery” and a “revolutionary treatment” for pwMS. The documentary recounted Zamboni’s personal story inspired by his wife who has MS: “For Zamboni, it’s more than a medical quest, it’s a journey fueled by love.” It portrayed pwMS who had undergone the procedure and experienced dramatic improvements. There were no discussions of possible risks associated with the procedure or any effort toward a “neutral balance” in the story.
The CTV W5 episode framed the issue in an uncritically positive tone triggering Canadian patient demand and medical tourism for liberation therapy. The documentary particularly captured the miracle/liberation frame when a journalist stated that “it could free patients from a lifetime of suffering,” and quoted an ally doctor of Zamboni that “it may be the cure for MS.” Similar miracle/liberation frames were evident in clips showing how pwMS, previously in wheelchairs, were suddenly “healed” and able to walk after undergoing treatment. The episode highlighted pwMS and doctors expressing confidence about the potency of liberation therapy as promising in changing how MS is managed.
Traditional News Media Stories
The W5 documentary established how the traditional print news media described the perspectives of stakeholders involved in the debate. Briefly, early in the coverage, national and provincial news stories sensationalized liberation therapy as a “cure” for MS and included 96 stories in Phase 1 (see Figure 1 which shows the distribution of the 378 stories over time). PwMS demanded clinical trials and access to the procedure in Canada. The first news story which appeared in the November 21, 2009 edition of the Globe and Mail identified liberation therapy as offering hope to pwMS. Saskatchewan became the first province to support clinical trials and media coverage focused on this decision. Liberation therapy received the highest coverage in the prairie newspapers (Saskatchewan and Manitoba, where the prevalence of MS is higher; Beck, Metz, Svenson, & Patten, 2005). Phase 2 reflected a period of mounting pressure over the association between CCSVI and MS and the effectiveness of liberation therapy with 147 stories. Many newspapers positioned their stories as a polarized debate pitting pwMS and newly emerging advocacy groups against the government/scientific community. There were general calls for the need to conduct studies. News coverage in Phase 3 begins with the federal government’s decision to fund clinical trials in June 2011, culminating with 135 stories. While most news outlets covered the issue less, the Regina Leader Post was a notable exception recording the highest number of stories during this phase, mostly centered on the Saskatchewan government’s decision to sponsor pwMS for clinical trials at a medical facility in Albany (United States).
Number of stories by news outlet by phase.
Social Media (Facebook) Posts/Comments
Similar to print media stories, the CTV W5 special coverage arguably provided the avenue to create most of the Canadian Facebook pages that surfaced and continued throughout this study period. Table 1 provides an overview of the 10 pages (6 based in Canada and 4 international: United Kingdom, Mexico, Australia, and United States) from which we sampled 893 posts.
While the mandates of these pages are mostly to raise awareness about the topic, provide links to medical research (where some pages also include references to research showing negative findings), and, for seven pages, to include personal testimonials, only the CCSVI-UK page has a mandate to be controversial:
To raise UK awareness of CCSVI. To continually stir the political and medical waters to get this condition taken seriously [ . . . ] and treated fairly within mainstream hospitals [italics added] (CCSVI-UK Facebook page)
Overall activity within our sample of these pages has the peak of activity within the “pressure” phase at 465 posts, that are book-ended by similar levels of activity with 224 posts sampled in the “push” phase and 204 posts sampled within the “trials” phase. While many of the Facebook pages show this general ebb and flow in activity within the sampling frame, the CCSVI & MS—a cure? page experienced a substantial drop in activity in 2010, with only four posts grouped shortly before and after the Canadian government’s decision to not fund clinical trials. By contrast, it is not until April 29, 2013 that one post from a follower from the CCSVI-UK page notes the overall decline in interest in the CCSVI hypothesis and subscribers.
Comparing the Dominant Frames Between the News Media and Facebook
Figures 2 and 3 illustrate shifting trends over the different phases characterizing the issue. While considerable similarities in the dominant collective action frames invoked in the news media and Facebook exist, the tone of the narratives and the type of content that is emphasized differ.
Percentage of Facebook posts by frame and phase.
Percentage of news media stories by frame and phase.
While we documented seven discrete descriptive themes within the study period in Facebook and the news media, we present them more broadly through the components that helped to create the collective action identity of pwMS: people who suffer from a disease with few therapeutic options and their family members who care for them. Initial representations of the CCSVI issue created an empathetic group. These visible sufferers are simultaneously positioned as more moderate by expressing the need to wait for scientific verification of the CCSVI hypothesis against those who are more visceral in their challenge of scientific authority, arguing for their rights as citizens and demanding access. Oscillating within these two positions are the adversarial stances taken up by various actors seeking to preserve their authority in having the power to define these different discourses.
Both data sets had very strong representations of the hope and miracle/liberation frames over the three time periods. National and regional newspapers framed liberation therapy as a miracle, motivating pwMS’ desire for the procedure. Because it was not available in Canada, medical tourism dominated the discourse until the federal government announced plans to fund clinical trials in June 2011. On Facebook and in print media, the miracle frame was most prevalent in articles/posts by pwMS’ and family members:
Many Canadians have become instant believers as they hear an unending supply of stories touting success rates of 90 per cent. The very name of the technique (“the liberation treatment”) has added fuel to the media’s convincing expectations that MS victims can be set free from a progressively debilitating disease. (Edmonton Journal, May 15, 2010)
Similarly, Facebook posters vividly recorded pwMS’ testimonials after liberation therapy. Overwhelmingly, the procedure “freed” affected persons from their disease and they were now able to undertake their daily activities with reduced restrictions. The narratives urged other pwMS to obtain the procedure:
Today my mom . . . had five angioplasties. . . . She said as they did the first one . . ., the grogginess in her head was gone . . . everything became brighter and clearer. . . . Another CCSVI miracle happened today! (Facebook Post, Canada, male follower, August 18, 2010)
However, what is most interesting are the differences between how the issue is presented when it is tempered by news media norms, sensationalizing while still aiming for balance and neutrality, against user-generated content unfettered by professional norms. Through these differences a broader collective action oppositional frame emerges that challenges the dominant discourse of science-based medicine. It begins with medical specialists and scientific researchers asserting their expertise, and by extension, government policymakers open to expert recommendations. This expert position, while expected and necessary, became hotly challenged by pwMS.
Specifically, while oppositional frames were sometimes captured in the news media, the early emphasis in the traditional news media privileges a responsible health policy and science-based discourse: The CCSVI hypothesis is positioned as a hopeful procedure for pwMS but in need of more testing and evaluation before it is made available in a publicly funded health system. This was epitomized in provincial news coverage where governments issued explicit policy responses (e.g., to pay for pwMS to participate in clinical trials elsewhere). Emphasizing the need to wait for research before embarking on medical tourism, the United States and Canada’s national MS Societies announced seven new studies through their first ever joint-research initiative. Yet while experts argued the need to wait for research, reporters also positioned pwMS pushing for the therapy to be made available:
A fast, easy cure for multiple sclerosis has been found, but Canadian health officials won’t let MS victims have it [ . . . ] “[ . . . ] (health officials) are dangling my life in front of me, and laughing, ‘Can’t have it! Can’t have it!’” said [pwMS], her voice trembling as she spoke to the crowd from her wheelchair. (Edmonton Journal, May 6, 2010)
Emotions surrounding the issue grew hotter a few months later once the Canadian health funding council expert panel of researchers, clinical specialists, and ethicists released a report of their unanimous recommendations to the federal health minister indicating that “it is not scientifically advisable or ethically acceptable to conduct clinical trials at this time” (Calgary Herald, September 1, 2010; covered by all news outlets); a recommendation later accepted by the Health Minister.
Despite the presence of early challenges to waiting for scientific protocols to complete verification studies on the merits of the proposed treatment, oppositional injustice framing intensified after the decision was reached to not fund clinical trials. PwMS moved into greater attack mode against health care providers and policymakers in charge of funding the public health system, and in making demands that access to liberation therapy is their right:
We CANNOT WAIT for all the clinical trials [ . . . ]. PEOPLE ARE DYING RIGHT NOW for want of a simple angioplasty. We want ACTION NOW and are preparing TO FIGHT FOR IT using a legal challenge. (Facebook Post, Canada, male follower, September 9, 2010) Neurologists have in my opinion added millions to big pharma. . . It is time MSer’s take back what is theirs . . . Neurologists do NOT control the body! (Facebook Post, Canada, male follower from November 15, 2010)
The National Post, having adopted a more critical stance toward CCSVI, unlike its national competitor, the Globe and Mail (at least initially), captures the inherent tensions of patient advocates on Facebook:
Most fascinating in this dance between the health ministers and the MS lobby is the way it reflects a larger debate in progress in many other medical theatres. Pesky patients clamouring for the latest in medical procedures are a nuisance for the medical establishment as well as the government, both of which would prefer to be dealing with the comparatively subservient public that existed before the Internet. How nostalgic government and the medical establishment must be for that era when they knew best, when patients were less informed and amounted to lemmings directed by doctor or government edict. Patients couldn’t possibly understand the complexity of medical issues, then. And this attitude persists today, in the doctors who decry the Internet as dangerous, because it equips patients with all sorts of information on treatments, which they will then demand from their doctors and medicare administrators (National Post, September 28, 2010)
When the federal government reversed its position to fund clinical trials in June 2011 oppositional framing remained evident but shifted focus. The traditional news media followed standard news norms: covering the national policy decision reversal to now fund clinical trials before moving its attention to other issues, only returning to the CCSVI hypothesis to report on delays in identifying suitable protocols to carry out the studies in Canada, or to shift its attention to adopt a less CCSVI-supportive tone. While the traditional news media shifted toward greater support for the medical/science cautious positioning over time, Facebook posts continued in its oppositional stance:
Obviously we have CAUSED A POSITIVE INFLUENCE! [ . . . ] neurologists could and would bully whomever they could when others stated their ideas on MS [but neurologists] DO NOT own MS. It will take a concerted effort by all to find answers. [ . . . ] They have and are holding us to/for ransom while assuring their bank accounts grow. Neurologists are NOT the Alpha dog they assume they are! (Facebook Post, Canada, male follower from September 10, 2012)
Discussion
When broadly viewed as a collective-action oppositional injustice frame, the novel CCSVI hypothesis became heavily debated in public discourse: The medical community was blamed for privileging an evidence-driven discourse that guides best practice and mandated professional norms for standard care against wanting to see their patients improve. The situation became ripe for pitting experts against experts (neurology vs. vascular surgeons) and for promoting only “proven” therapies, namely disease-modifying drugs, which generated conspiracy sentiments that neurologists were in “bed” with big pharma and cared only for their own bottom line. By contrast, user-generated content enabled dominant discourses to be challenged by pwMS serving as their own champions in a “David vs Goliath” battle against the health system and their doctors as they sought availability for liberation therapy using an injustice-oriented rights-based frame and exercising their own agency: my body, my risk. Although not successful in having liberation therapy publicly funded, they created sufficient pressure to reverse the policy decision about funding clinical trials to test the treatment. Elected policymakers were caught in the middle about how best to respond to the various pressures by pwMS and the broader public creating huge policy flip-flops.
Our study offers a mechanism to better understand how a group of individuals collectively formed an identity around a unified “us vs. them” injustice frame. In Gamson’s (1995) terminology, oppositional framing processes first needed to compellingly articulate CCSVI and liberation therapy. Nothing could have been more helpful than the televised documentary positioning a vascular surgeon husband to challenge his own expert limits in a quest to find a solution to his wife’s MS. His hypothesis and the controversy surrounding it by competing experts was propelled into public discourse, where scientific debates were played out in the news media and on Facebook. The initial news media framing of liberation therapy as a potential miracle instantly catapulted pwMS: They were people who were suffering but within arm’s reach of a “cure” making them a sympathetic group and strong advocates to apply pressure for its access within the Canadian health system. Strategically, pwMS contested the wait-and-see evidence-based discourse to redefine the issue as a rights one. This was more easily accomplished through social media posts because content is user-generated: a rights-based discourse focused on pwMS’ rights to health and their right to determine what they view as acceptable risks against the concern of health care professionals’ values of “do no harm” based on standardized protocols for science and policymakers seeking a sustainably funded health system supporting only proven therapies. When combined with evaluations of source credibility in a politicized environment (Lupia, 2013), pwMS identified more closely with Zamboni and his supporters as the credible experts compared with neurologists and other scientific experts defending the science-based proven therapy discourse.
The injustice frame epitomized emotional appeals that suffering people were being denied access to a treatment that “worked.” It did not matter that CCSVI as a hypothesis or venous angioplasty/liberation therapy was never empirically proven effective, either then or long past our study period when results of the long-awaited Canadian clinical trial found no evidence of therapeutic benefit (Crowe, 2017). While a randomized control trial is intended to test if an intervention works, critics continue their boundary work in arguing that Canadian trialists were only interested in proving that it did not work: “This is an excellent example of sham science . . . we [pwMS who have accessed liberation therapy] know it works” (Ubelacker, 2017).
The stark difference between expert and patient/lay public perceptions of risks documented here and elsewhere was not unexpected when viewed from the lens of the social amplification of risk framework (Pidgeon, Kasperson, & Slovic, 2003). In the first phase of the debate, pwMS’ voices, as opposed to expert voices reluctant to engage in media communication (Scheufele, 2013), garnered more attention. In the flurry of online anecdotal stories promoting the procedure, the news media initially contributed to an attenuation of any associated risks in its largely positive stance toward liberation therapy. More strikingly, in media stories and Facebook posts, pwMS referred to the CTV W5 documentary as “evidence” supporting liberation therapy as a less risky medical procedure, consistent with findings from other studies into public understanding of science: If the information appears “scientific” then it is treated as such by general audiences (Berdahl, Bourassa, Bell, & Fried, 2016; Thomm & Bromme, 2012). Similar patterns were found in previous studies of media portrayals of unproven therapies in uncritically positive tones, demonstrating how news media can shape public risk perception (Frewer, Miles, & Marsh, 2002). Specifically, print media sensationalization of liberation therapy as a cure for MS attenuated the potential risks and motivated many pwMS to seek liberation therapy outside Canada despite the surrounding uncertainties (Driedger, Maier, Marrie & Brouwers, 2017; Snyder et al., 2014). As a result, pwMS squarely blamed those who opposed the availability of liberation therapy in Canada as being influenced by big pharmaceutical companies (Driedger, Maier, Marrie & Brouwers, 2017; Pullman et al., 2013).
PwMS’ voices were further amplified in Phase 2 with considerable pressure on governments and the MS Society to fund clinical trials. This amplification may reflect the willingness of other countries without universal health systems to make the procedure available, to the dismay of pwMS expressing their dissatisfaction with Canada’s resistant stance in both data sets. This amplification yielded the desired result when the federal government funded clinical trials in 2011. Once the decision to fund trials was made, Phase 3 was not characterized by any real attenuation or amplification tensions in news media coverage, possibly because patient demand for the procedure was partially satisfied by the clinical trials. This was viewed as a victory for pwMS, and typical of journalism, print media coverage portraying pwMS’ agitation against governments for liberation therapy subsided. As deaths and complications became public, the print media presented the issue more cautiously (Pullman et al., 2013). Hence, our final phase saw the print media overwhelmingly amplifying the experts’ voices and the risks of liberation therapy. This vindicated the experts who all along insisted that the risks of the procedure far outweighed the benefits.
By contrast, the collective action oppositional frame continued to grow in Phases 2 and 3 within Facebook. For many posting on Facebook, liberation therapy needed no further study. Rather, governments and health systems needed to provide this therapy to those wanting it. In their minds, the proof existed despite the lack of scientific clinical studies, including results that have yet to be published from the Canadian clinical trial (Traboulsee, 2013), because other experts (i.e. those offering the procedure) continue(d) to dispute the trial’s methodology. The minute the “dueling experts” phenomena is invoked, it facilitates continued polarized knowledge claims (Lupia, 2013), legitimizing the use of other forms of knowledge and/or the use of outcomes not easily measured to maintain the debate (National Research Council, 1989). Effectively, a controversial situation is never fully resolved, although the Canadian trial findings will definitively end any health system debate about offering liberation therapy in Canada.
The varying perspectives regarding liberation therapy expressed by the different stakeholders have highlighted the need for more effective risk communication between experts, pwMS, and the lay public. A growing body of work has bemoaned experts’ lack of knowledge on the informational needs of the lay public. Thus, these experts may have the tendency to communicate to “themselves as model audience members and present the information that they themselves find most important and interesting” (Bruine de Bruin & Bostrom, 2013, p. 14062). Experts’ use of scientific jargon in science communication may lead to disinterest and different interpretations by the public (Lupia, 2013). Experts have also been criticized for confining their research findings to scientific meetings and peer-reviewed journals and have failed to use other channels to address how this can be used and interpreted in the public sphere. The lay public plays a significant role in deciding funding, utilizing and regulating scientific discoveries and, as a result, experts may face challenges communicating their research in ways that can resonate with the lay public (Scheufele, 2013). Nevertheless, with changing communication channels through the “democratization” of information via the Internet, social media, and the like, risk communicators need to develop strategies to engage the public differently, and medical experts need to be prepared to respectfully discuss anecdotal social media evidence when it is raised during appointments (Driedger, Maier, Marrie & Brouwers, 2017; Mazanderani, O’Neill, & Powell, 2013). That said, being mindful of Dunwoody’s (1999) caution over the use of objectivity (being accurate) or balance (highlighting a range of views), equivalency framing scholars need to design experimental studies to guide how risk communicators can empathize without providing false hope or compromising standards of proof in establishing support for effective therapies.
Moreover, different risk communicators need to develop strategies to dialogue with the media better. Recently, efforts are being made by third parties to link journalists and researchers. For example, a nonpartisan online project initially funded by the Canadian Institutes of Health Research and Research Manitoba (EvidenceNetwork.ca) has emerged in Canada to foster links between the media and health researchers/experts. This network connects health researchers with the media on different topics by providing journalists with credible, reliable, and accessible evidenced-based information for subsequent dissemination to the public. These researchers also help to develop neutral and evidence-based backgrounders and other materials for media use. These materials highlight gaps in an issue or even highlight areas worthy of question that reporters can use (or not) in their own interviews of sources on the topic. Such efforts need continued evaluation to assess the relative impact in providing better science communication.
Conclusion
It can never be known if the outcome could have been different had Canadian scientists, neurologists, and researchers taken greater pains to be more empathetic in their public evaluation of liberation therapy. As it played out in the Canadian landscape, there were no winners. Some could argue that science won because following the necessary scientific protocols demonstrated that robust evaluations of any hopeful hypothesis is needed to ensure health system dollars are put toward the most promising, effective and safe therapeutic options. Some could argue that pwMS won, even if the ultimate objective for some was lost. PwMS successfully advocated to have research funded along an agenda that met their priorities rather than the priorities of researchers. In an age of patient-oriented research, something Canada’s health research funding agency actively promotes (Canadian Institutes of Health Research, 2014, 2017), shifting the power of who controls the research agenda is important. Unanticipated positive (and negative) outcomes from this issue have been documented elsewhere, such as medical specialists recognizing the need to engage with patients more respectfully and pwMS having greater control over research agenda priorities for the MS Society of Canada (Driedger, Maier, Marrie & Brouwers, 2017).
Nonetheless, controversies like “liberation therapy,” that signal hope for people with unmet therapeutic needs, will reoccur. In the health consumerist culture, with growing expectations that individuals have to manage their own health, and the democratization of information on the Internet, better strategies for managing what Roe (2016) refers to as “policy messes” are needed. As applied to this case study, this management requires the ability to recognize the pattern (potential medical breakthrough to address unmet therapeutic need), formulate scenarios for how the pattern may unfold (issue vividly playing out in news media capturing public imagination and providing a forum for a sympathetic group of sufferers), and translate these into an actionable response. This case analysis offers several instructive lessons for what these actionable responses could entail. First, while the news media remain an effective battleground for public controversies, researchers need to also focus their attention on how user-generated content may more effectively challenge the dominant narrative of an issue. Second, medical professionals need to be more mindful of how they provide clinical recommendations and evaluate potential therapeutic options to the patients who seek their advice, even options that are highly experimental and insufficiently proven to work. It is possible to maintain fidelity to one’s clinical expertise (e.g., recommending against an unproven therapy) while still empathizing why someone with few available therapeutic options might want to explore any possible avenue. Health care providers are gatekeepers within the health system to ensure that public resources are used effectively as well as advocates for their patients to get the best possible care. Third, health policymakers need to establish better protocols to respond to the next “miracle breakthrough” in a way that establishes consistent criteria for evaluation, and more importantly, to openly communicate this before the next breakthrough takes the public, and by extension the political system, by storm. However, to assess if any of these strategies may work, communication scholars need to design and conduct experimental equivalency framing studies to see what types of strategies may work better (or not), and under what conditions do alternative outcomes arise from these options, in helping to identify the “sweet spot” (should one even exist) around expressions of empathy and ensuring scientific rigor.
Footnotes
Acknowledgements
We gratefully acknowledge the contribution of Joshua Greenberg (School of Journalism and Communication at Carleton University) for his comments on an earlier draft of the paper and to Jade Weimer (University of Manitoba) for her assistance in coding the social media data set. We also acknowledge the extremely helpful comments on the part of three anonymous reviewers, whose suggestions have helped to strengthen the manuscript considerably.
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Funding for this study was provided by the Multiple Sclerosis Society of Canada and Research Manitoba (EGID 1261).