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What are the ways in which social media is used in the context of complementary and alternative medicine in the health and medical scholarly literature? a scoping review

Abstract

Background

Despite the increased use of social media to share health-related information and the substantial impact that complementary and alternative medicine (CAM) can have on individuals’ health and wellbeing, currently, to our knowledge, there is no review that compiles research on how social media is used in the context of CAM. The objective of this study was to summarize what are the ways in which social media is used in the context of CAM.

Methods

A scoping review was conducted, following Arksey and O’Malley’s five-stage methodological framework. MEDLINE, EMBASE, PsycINFO, AMED, and CINAHL databases were systematically searched from inception until October 3, 2020, in addition to the Canadian Agency for Drugs and Technology in Health (CADTH) website. Eligible studies had to have investigated how at least one social media platform is used in the context of a single or multiple types of CAM treatments.

Results

Searches retrieved 1714 items following deduplication, of which 1687 titles and abstracts were eliminated, leaving 94 full-text articles to be considered. Of those, 65 were not eligible, leaving a total of 29 articles eligible for review. Three themes emerged from our analysis: 1) social media is used to share user/practitioner beliefs, attitudes, and experiences about CAM, 2) social media acts as a vehicle for the spread of misinformation about CAM, and 3) there are unique challenges with social media research in the context of CAM.

Conclusions

In addition to social media being a useful tool to share user/practitioner beliefs, attitudes, and experiences about CAM, it has shown to be accessible, effective, and a viable option in delivering CAM therapies and information. Social media has also been shown to spread a large amount of misleading and false information in the context of CAM. Additionally, this review highlights the challenges with conducting social media research in the context of CAM, particularly in collecting a representative sample.

Peer Review reports

Background

Over 3.6 billion people worldwide used social media in 2020 [1]. This number has been predicted to increase to 4.41 billion by 2025. The American population using at least one social media platform such as Facebook, Snapchat, Instagram, Twitter or YouTube, has continuously increased over the past 15 years from just 5% of Americans in 2005 to 72% of Americans in 2019 [2]. Similarly, in 2017, 94% of Canadian internet users had at least one social media account [3]. Social media is comprised of a complex ecology of networking sites and falls in the larger context of health communication [4, 5]. Social media has changed the landscape of health information by allowing for dialogic communication rather than one-sided communication from health professionals and experts, resulting in health communicators such as practitioners, policy makers, and patients monitoring, listening to, and engaging with dialogue on social media [6,7,8,9]. It has been shown that 72% of internet users search for health information online and social media is one source of such health information [10, 11]. Social media is used to discuss health information with regards to complementary and alternative medicine (CAM) [11, 12]. How social media is used in the context of CAM would be valuable to better understand as surveys conducted by Pew Research Center have found that 35% of internet users have looked online for information about CAM specifically [11, 12].

CAM is frequently used across the world and consists of a variety of health care approaches that are not typically part of conventional medicine or completely integrated into the country’s main health care system. CAM includes, but is not limited to, manual therapies such as chiropractic and osteopathy, natural products such as herbal medicines and dietary supplements, and other forms of therapies including naturopathy, homeopathy, and traditional Chinese medicine [13,14,15,16]. The National Center for Complementary and Integrative Health (NCCIH) in the United States defines “complementary” approaches as those that are used together with conventional medicine and “alternative” approaches as those that are used in place of conventional medicine [13, 14, 17]. Positive motivations for trying CAM which may have contributed to its popularity include factors such as its accessibility, holistic and non-invasive nature, and perceived effectiveness and safety, while negative motivations include factors such as dissatisfaction with conventional medicine, rejection of science and technology, and desperation [18,19,20,21]. How CAM is portrayed in social media is important considering the ever-growing popularity and usage of social media and its ability to influence health behaviours and beliefs [22]. In the context of CAM, social media can be used to enhance patient’s access to health care related resources and support [23, 24]. Media sharing platforms such as YouTube are usually free, easy to use, and accessible on both mobile and desktop devices [25]. Also, unlike health information in the medical literature, when health information is shared on social media it is often written in lay terms [24, 26]. By allowing individuals to engage, interact with, and contribute health information, social media creates an environment that encourages patient conversation [27,28,29]. Sharing health information on social media can motivate and inspire others, but it also has the power to facilitate the spread of misinformation about health-related topics [30]. There are various scholars who study the processes and risks of misinformation and disinformation on social media and features of social media that may contribute to the spread of health-related misinformation [31,32,33]. Firstly, the low cost of generating and disseminating information over social media allows misinformation to spread globally at a rapid pace. Additionally, virtually anyone can post about CAM on social media regardless of academic or professional training, knowledge or skills [34]. Furthermore, it can be difficult to determine the credibility of social media content as users are self-publishers and often are not subject to scrutiny or accountability [30]. Moreover, since social media feeds are personalized to individual beliefs, values, preferences and biases, there is information silo and echo chamber effects which result in decreased exposure to differing opinions, reinforcement of confirmation biases, and the amplification of misinformation [35, 36].

Currently, to our knowledge, there is no review that compiles research on the ways in which social media is used in the context of CAM. Due to the increased impact of social media as a form of information sharing in North America, and the significant impact that CAM can have on people’s health and lives, it is important that a scoping review is performed to outline the research on this topic and identify the gaps. The results from this scoping review could help inform various stakeholders such as clinicians, policy makers, patients, and researchers. Thus, the aim of our scoping review is to provide a summary of the research on the ways in which social media is used in the context of CAM.

Methods

Approach

As described above, to our knowledge, there is a lack of review articles on the ways in which social media is used in the context of CAM. Thus, a scoping review methodology was appropriate as it allows for systematic scoping of a broad array of research and the identification of literature gaps [37]. The method for conducting this scoping review was based on Arksey and O’Malley’s five-stage scoping review framework [38]. This method was also supplemented by modifications proposed by Levac, Colquhoun, & O’Brien and Daudt, van Mossel, & Scott [39, 40]. We used this five-stage scoping review framework to ensure that all scoping review prerequisites were met including identifying and analyzing the current literature on the topic, summarizing it, and recognizing knowledge gaps that could potentially be looked into by future research [40].

Step 1: Identifying the research question

Our research question is as follows: what are the ways in which social media is used in the context of CAM in the health and medical scholarly literature? For the purpose of this scoping review, we referred to the Cochrane Complementary Medicine group’s operational definition of CAM [41]. For social media, we referred to the definition by Obar et al. 2015 as it is comprehensive, containing four parts, and has been used by many others in the academic community [42]. This definition states that social media consists of the following four main characteristics:

  • 1. Social media services are (currently) applications that are Web 2.0 Internet-based

  • 2. The lifeblood of social media is user-generated content

  • 3. For a site or app designed and maintained by a social media service, individuals and groups create user-specific profiles

  • 4. The development of social networks online by connecting a profile with those of other individuals and/or groups is facilitated by social media services

Step 2: Finding relevant studies

After identifying the research question, we found relevant studies to include in our scoping review using a comprehensive and systematic search strategy. We searched the bibliographic databases MEDLINE, EMBASE, PsycINFO, AMED, and CINAHL. Indexed headings and keywords relating to social media and CAM were used in each of the search strategies where appropriate. Additionally, we searched the Canadian Agency for Drugs and Technology in Health (CADTH) for any grey literature related to our topic. Search terms on CADTH included “complementary and alternative medicine” and “social media”. The search of these various databases and websites included literature from inception until October 3, 2020. A sample search strategy used is shown in Table 1.

Table 1 MEDLINE Search Strategy for Studies Investigating How Social Media is Used in the Context of CAM, Executed October 3, 2020

Step 3: Selecting the studies

We included research articles and protocols in this scoping review. While review articles were not eligible, we screened the reference lists of review articles that appeared relevant to our research question to identify eligible articles. Conference abstracts, commentaries, editorials, letters to the editor, opinion pieces, and articles that were not published in the English language were ineligible. Additionally, articles that could not be publicly accessed, found through our library system, or ordered via interlibrary loan were excluded. In order to be eligible, it had to be evident in the record’s title and/or abstract that the study was about how any form(s) of social media is used in the context of any form(s) of CAM. Two authors (JYN and NJV) pilot-screened a subset of titles and abstracts individually and then met to verify their application of the inclusion criteria. Then, all full articles were screened independently in duplicate by JYN and NJV. In the case of disagreement about article eligibility, when discussion between the two authors (JYN and NJV) was not sufficient to resolve the disagreement, a third author (JS) partook in the discussion and a majority vote took place to determine eligibility.

Step 4: Charting the data

Arksey and O’Malley’s descriptive narrative method was used to critically assess articles meeting the inclusion criteria [38]. To chart the eligible articles, the following information was extracted: first author and year of publication, country of authors, study setting, article type, objective, population and sample size, CAM discussed/used, social media discussed/used, primary and secondary outcomes, how primary and secondary outcomes were measured, main findings, challenges encountered, and study conclusions. Two authors (JYN and NJV) participated in a pilot data extraction exercise using a subset of eligible articles. Any discrepancies between the pilot data extraction of the two authors were discussed and resolved by three authors (JYN, NJV and JS). Then, data from all eligible articles was independently extracted by JYN and NJV; following this, all authors met to discuss and resolve any discrepancies. Only data relevant to the research question was extracted and charted from the eligible studies. Additionally, a descriptive map of the literature on our topic was created which highlighted key themes that emerged from the analysis.

Step 5: Collating, summarizing, and reporting the results

Tables were used to summarize charted data and an inductive thematic analysis was performed on descriptive data [43]. The descriptive data was reviewed by all authors. NJV and JS then identified codes for the descriptive data based on main topics discussed in the articles and organized the articles into thematic groups. The thematic groups grouped articles based on the identified commonly discussed topics. NJV and JS also created a narrative discussing how these results connect to the research question. Moreover, NJV and JS identified knowledge gaps in the current literature. JYN reviewed all of the aforementioned tasks, and any discrepancies were discussed and resolved by all authors.

Results

Search results

Searches retrieved 1714 items following deduplication, of which 1620 titles and abstracts were eliminated, leaving 94 full-text articles to be considered. Of those, 28 were not eligible because they did not fit our definition of social media (e.g., newspapers or magazines), 18 did not fit our definition of CAM, 7 did not focus on how social media is used in the context of CAM, 6 were an abstract, and 6 were a review. This left 29 articles for inclusion in this scoping review [44,45,46,47,48,49,50,51,52,53,54,55,56,57,58,59,60,61,62,63,64,65,66,67,68,69,70,71,72]. In Fig. 1, a PRISMA diagram can be found depicting this process.

Fig. 1
figure 1

PRISMA Diagram. *List of Abbreviations: CAM = complementary and alternative medicine, CADTH = Canadian Agency for Drugs and Technologies in Health

Eligible article characteristics

Eligible articles were published from 2012 to 2020 and were conducted by researchers from the United States (n = 17), Canada (n = 4), Australia (n = 2), France (n = 1), Germany (n = 1), Spain (n = 1), and Taiwan (n = 1). Additionally, one study was conducted by researchers from China, Australia, and the United Kingdom (n = 1), and another study was conducted by researchers from Iraq and Jordan (n = 1). Of these 29 eligible articles, 10 focused on a study population from a single country, meaning that only social media content posted by users from a specified country was included in the study. These countries included the United States (n = 5), Australia (n = 1), Germany (n = 1), Iraq (n = 1), Spain (n = 1), and Taiwan (n = 1). The remaining 19 eligible articles focused on social media content from more than one country, 13 of which focused on an international sample of social media content (i.e., all of Twitter). While a diverse array of CAM was explored, the most common were yoga (n = 4), medicinal cannabis (n = 4), dance therapy (n = 2), music therapy (n = 2), and spinal manipulation (n = 2). While nutrition is not typically defined as CAM, we included articles such as the one by Chan et al. despite their focus on nutrition because they included CAM representation and discourse, such as the theme of promoting alternative medicine while challenging conventional medicine [46]. The most commonly discussed social media platforms were Twitter (n = 6), Facebook (n = 5), and YouTube (n = 4). The articles used a variety of qualitative and mixed methods in their social media research approaches. Of the 29 eligible articles, 24 were described generically as qualitative without naming a specific design or were described in terms of data collection techniques (e.g., focus group and interview) or analytic techniques (e.g., content analysis and discourse analysis). Of the remaining 5 eligible articles, two were identified by the authors as following a case study design, one was identified as following quantitative approaches, and two were identified as mixed methods studies based on its methodology and the presence of a combination of qualitative and quantitative approaches. The details associated with all eligible article characteristics, including study aims, can be found in Table 2; the main findings, challenges encountered, and conclusions of all eligible studies can be found in Table 3. No studies reported any secondary outcomes.

Table 2 General Characteristics of Eligible Studies
Table 3 Main Findings, Challenges Encountered, and Conclusions of Eligible Studies

Findings from thematic analysis

Three main themes were identified through our thematic analysis. These themes are described in the paragraphs below. Sample excerpts from included studies representative of each of these themes are shown in Table 4.

Table 4 Quotes from Eligible Studies Supporting Themes

Theme 1: To share user beliefs, attitudes, and experiences about CAM

Several studies provided insight into the beliefs, attitudes, and experiences of CAM users [49, 50, 52, 54, 55, 57, 59, 62, 63, 67, 69]. Three subthemes developed among the studies: negative beliefs and attitudes about CAM use, positive beliefs and attitudes about CAM use, and positive and negative experiences of using CAM. Studies included in this theme described a range of beliefs, attitudes and/or experiences related to CAM which were coded into categories based on whether they reflected predominantly positive or negative views.

Subtheme 1.1: Negative beliefs and attitudes about CAM use

The first of the three subthemes found among the studies was negative beliefs and attitudes about CAM use. A number of studies identified negative beliefs and attitudes about CAM treatments that were posted on social media [52, 54, 63, 67]. One study sought to “analyze the sceptical movement’s discourse on complementary therapies in Spain, as well as comprehend its mobilisation against these therapies” [52]. The authors reviewed more than 6000 posted tweets and found that 79.1% were against or not in favour of CAM treatments. The common themes conveying concerns about CAM among the tweets were “anti-science”, “fighting against harmful, for-profit practices”, and protecting “the most vulnerable [who have] little knowledge of science”. In a different study, researchers investigated the presence of critiques and debates surrounding the effectiveness and risk of chiropractic and spinal manipulation therapy (SMT) on Twitter [67]. It was found that the efficacy of these CAM treatments was rarely questioned or doubted. Additionally, the potential risks were rarely mentioned or debated. However, of the few tweets that were skeptical or critical about the use of chiropractic and SMT, most had been liked and retweeted, demonstrating that many skeptical or critical perspectives of CAM use elicited high engagement among social media users even though their voices were marginal in number.

Subtheme 1.2: Positive beliefs and attitudes about CAM use

Three studies intended to analyze the public beliefs and attitudes expressed about CAM use on social media and assess whether they were predominantly in favour of or against CAM use [49, 62, 69]. One study analyzed descriptions of CAM treatments used by young women diagnosed with cancer who kept an online cancer blog [69]. The descriptions of CAM treatments were uniformly expressed in a positive and empowering manner by the young women. Additionally, two studies assessed how cannabidiol (CBD) products were presented on popular social media platforms, including Twitter and Pinterest [49, 62]. Both studies found that the majority of posts presented CBD in a positive light, with many citing physical or mental benefits, such as relief from anxiety, depression, pain, and inflammation. Similarly, a study investigating posts on Instagram related to yoga found that most posts emphasized the physical benefits of yoga and used words like “fitness” when describing yoga [55]. Another study that focused on cannabis-related conversations on Twitter discovered that the topics of conversation ranged from using cannabis for the first time to the legality and therapeutic value of cannabis [50]. Regarding the therapeutic value, posts discussed numerous medical conditions such as Crohn’s disease, cancer, post-traumatic stress disorder, anxiety, and depression that are being treated or have the potential to be treated by cannabis.

Subtheme 1.3: Positive and negative experiences of using CAM

Four studies found that the information most sought by consumers on social media sites was relating to the experiences of past users of CAM treatments [57, 59, 63, 69]. For example, one study analyzed questions posted on Yahoo! Answers relating to dietary supplement ingredients under the subsection, “Alternative medicine” under the section, “Health” [59]. It was found that the information most sought by consumers, defined by the greatest number of posts, was relating to the uses and adverse effects of dietary supplements. The most common uses of the dietary supplements were respiratory, thoracic & mediastinal disorders, cardiovascular & lymphatic system disorders, and psychiatric disorders, while the most common adverse effects were diarrhea, abdominal pain, palpitations, and headaches. Another study examined descriptions of CAM use among women diagnosed with cancer who maintained an online cancer blog [69]. The study found that the women used CAM treatments for a multitude of reasons, including the feeling of a loss of control, negative symptom experiences, as a means of reconnection to their bodies, and because of the desire to have a more active engagement in their medical care. Another study investigated social media as a platform to share information about the safety of Chinese patent medicine [54]. The authors found that there were a substantial number of posts on online blogging platforms about individuals experiencing adverse effects while using Chinese patent medicine.

A different study analyzed posts on Instagram related to KandyPens, an e-cigarette company that markets its products as aromatherapy devices [57]. The most predominant themes displayed in the posts were user experience and product appearance. Additionally, one study found that individuals had both negative and positive experiences with a popular CAM treatment, chiropractic [63]. The study explored debates surrounding chiropractic in the comment section of popular chiropractic-related videos on YouTube. The comments section was split between individuals with negative and positive beliefs, attitudes, or experiences regarding chiropractic. Individuals who held negative beliefs about CAM tended to argue that therapies such as chiropractic were not supported by sufficient evidence or “science”. Individuals who held positive beliefs about CAM usually alluded to personal experiences and raised issues with conventional medicine and the pharmaceutical industry.

Theme 2: Misinformation about CAM on social media

Misinformation about CAM being shared on social media was another theme that emerged. We did not make a judgement on what is considered misinformation. Instead, whether something was deemed misinformation was determined and stated by the authors of the included studies themselves. Numerous studies discussed how social media acts as a vehicle for the spread of misinformation about CAM [48, 49, 56, 61, 62, 67]. For example, since the onset of the COVID-19 pandemic, the quantity and popularity of tweets suggesting a link between spinal manipulation therapy (SMT) and immunity increased substantially [48]. Furthermore, posts about CAM on breast cancer patient social forums and Facebook groups have raised critical concerns about the reliability of information accessible to patients [56]. For example, it was found that some patients test CAM therapies that have not been shown to be safe nor effective or whose manufacturing quality have not been verified [56]. Additionally, information that is potentially dangerous can be shared on social media and without being reviewed by regulatory and monitoring systems [56]. However, studies suggest that not all information about CAM on social media, whether factual or inaccurate, is equally trusted by social media users [47]. For example, for naturopathic physicians, citing research articles in their blogs has been suggested as a valuable tool to build credibility both for them individually and for their discipline as a whole [71]. Additionally, one study's researchers showed their participants Facebook posts about research which found that homeopathy leads to health risks [47]. This study found that if comments criticize the intentions of the researchers rather than their expertise, they are more likely to effectively reduce perceived credibility of these Facebook posts [47]. Various studies found that there is a lack of qualified voices represented in social media posts about CAM [49, 61, 67]. For example, out of the 100 most widely viewed YouTube videos on cupping therapy, only 16 were created by qualified professionals [61]. Studies also stated that the high prevalence of misinformation about CAM on social media can help policymakers better understand and devise strategies to mitigate it, and raises questions about regulatory authorities’ role in labelling, approval, and surveillance [48, 56].

Theme 3: Challenges with social media research in the context of CAM

More than a third of studies identified challenges with social media research in the context of CAM [45, 48,49,50, 54, 56, 59, 61, 62, 64, 69, 71]. There were three subthemes that emerged across these studies, each representing a specific challenge with performing high-quality social media research in the context of CAM including: the inherent sampling biases, the privacy standards of social media platforms, and the difficulty identifying posts that represent the actual attitudes of the public. These subthemes highlight the difficulty in collecting a representative sample in social media research in the context of CAM. Although studies utilized different definitions of CAM and surveyed distinct CAM treatments on social media, all made specific determinations as to where to draw their search criteria [45, 48,49,50, 54, 56, 59, 61, 62, 64, 69, 71]. Studies with a narrow search criteria within a subset of CAM did not necessarily have a small sample size, therefore having a narrow search criteria was not viewed as a challenge with social media research in the context of CAM. Studies included in this theme reported a range of challenges related to social media research in the context of CAM.

Subtheme 3.1: Sampling biases are inherent

More than a third of studies reported that a challenge with social media research in the context of CAM was that sampling biases are inherent because social media users are not representative of the general population [45, 48, 50, 54, 59, 61, 62, 64, 69, 71]. Three studies included a sample of social media users from a single platform (e.g., Twitter) and attempted to draw conclusions about the broader population beyond those who engaged in social media [45, 50, 59]. While the authors of these studies were able to collect a sufficient sample of social media data, they acknowledged that obtaining a representative sample of the general population was difficult because individuals who chose to post to a particular social media platform may not be typical of the general public and their online activity may not reflect their behaviour in other settings [45, 50, 59]. Two studies that analyzed activity on Twitter related to particular types of CAM use also mentioned that their findings were not generalizable to the broader population and that they may have missed potential participants that had private accounts or did not have access to the internet [48, 62]. Additionally, two studies that utilized qualitative methodology to analyze activity on online blogs recognized that their data was not generalizable to the general public [64, 69]. The two studies also noted that participants were only accessed through online blogs so their identities were not captured, and thus, no medical condition or treatment-related details could be confirmed by medical record. Furthermore, various studies focused on posts from a single social media platform (Twitter) and acknowledged that their findings may not extend to other social media platforms [45, 48, 50, 69, 71]. Furthermore, two studies that only collected data on a single CAM treatment (e.g., Chinese patent medicine) on social media recognized that their findings may not extend to other CAM treatments [54, 59]. Two studies also acknowledged that the views of social media users who posted in languages other than English were not captured [61, 64]. It is important to note that for some studies, surveying a representative sample of the general population was not part of the study design, but rather to obtain an adequate sample of individuals who were current users of a specific type of CAM (e.g., spinal manipulative therapy) [41, 48, 49, 51, 56, 58].

Subtheme 3.2: Privacy standards of social media platforms

Furthermore, some studies mentioned that the reason there were challenges with social media research was because of the rigid privacy restrictions that prevented collecting detailed demographic information about users who were exposed to or interacted with a post on social media, but chose not to respond [45, 49, 56]. Authors of three studies, which explored either Facebook or Pinterest, discussed this challenge in their research [45, 49, 56]. For example, one study's researchers analyzed the use of Facebook to recruit a target group of people to a survey on a CAM product [45]. The study discussed its recruitment method, which was primarily through Facebook advertisements, and the challenge of having a limited ability to assess the magnitude of any differential response bias because so little is known about nonrespondents (i.e., those who viewed the study recruitment advertisement, but did not click on it). Similarly, another study discussed the difficulty with conducting social media research because social media platforms such as Pinterest do not share demographic information, the time of activity, or the extent to which users act upon the items they pin [49].

Subtheme 3.3: Challenges with identifying posts that represent the actual attitudes of the public

Some studies described that one of the challenges of working with social media data was identifying posts that represent the actual attitudes of the public [61, 62]. One study analyzed the public attitudes towards medicinal cannabis use for PTSD on Twitter [62]. The study reported that over 10% of all marijuana-related tweets were posted by the top 10 most popular cannabis-related Twitter accounts. This suggests that some of the tweets included in the study may have been sent through power users or Twitter bots [62, 73]. One study analyzed user-generated content found on YouTube about the practice of cupping therapy as a form of pain management [61]. The authors focused the study on the 100 most widely viewed English-language YouTube videos on cupping and noted that the results may not be generalizable to less popular YouTube videos.

Discussion

The purpose of our scoping review was to provide a summary of the research on the ways in which social media is used in the context of CAM. This study identified 29 eligible articles which were published between 2012 and 2020. The amount of available literature on this topic, while not overly voluminous, presents a broad range of social media platforms analyzing a variety of CAM treatments such as chiropractic, yoga, Chinese patent medicine, and medicinal cannabis. To our knowledge, this is the first study to perform a systematic search of the peer-reviewed and grey literature on this topic. As CAM-related health therapies and products are highly mediatized with a strong presence on social media platforms which can influence individual’s health beliefs, attitudes, and subsequent behaviours, the present study's findings may be of value to both health care practitioners and researchers alike.

Resources for practitioners, researchers, and patients: abundant, but of unclear quality

This scoping review also provides readers with the list of eligible articles included in the present study which may aid in their understanding of how CAM is portrayed in social media. While the eligible articles that were included in this scoping review have been developed and evaluated to some degree by academic researchers, the present study was only designed to scope out the number of CAM-related social media studies and their key characteristics. As expected, most eligible studies analyzed well-known social media platforms such as Instagram [55, 57, 60] and Twitter [50, 62, 67], however, some others examined lesser-known social media platforms including online illness blogs [69] and patient forums [56]. Furthermore, 12 eligible articles lacked generalizability due to challenges with conducting social media research including the inherent sampling biases [45, 48, 50, 54, 59, 61, 62, 64, 69, 71], the rigid privacy standards of social media platforms [45, 49, 56], and the difficulty identifying posts that represent the actual attitudes of the public [61, 62]. In addition, most studies analyzed data about a single type of CAM treatment (e.g., chiropractic) instead of multiple types of CAM treatments, which may have resulted in a lack of generalizability of study findings to other social media platforms and/or other CAM treatments.

Comparative literature

Discussion of Theme 1: to share user beliefs, attitudes, and experiences about CAM

With regard to comparative literature pertaining to the use of social media to share user beliefs, attitudes, and experiences about CAM therapies, several studies reported that social media can be a useful tool for patients, physicians, and other health care professionals because it pools information on patients’ evaluations of, and health outcomes from CAM therapies [43, 63, 64]. For example, one study explored the interest of patients with breast cancer in CAM-related social media posts [43]. The study indicated that patients during and after treatments for breast cancer had a strong interest in social media posts about CAM interventions to complement their approved treatments. Another study found that 8% of cancer related information shared on Facebook was about CAM therapies [63]. Moreover, one study found that social media has been used to discuss CAM related therapies for glaucoma, with 40% of glaucoma related tweets associated with CAM therapies [64].

Discussion of theme 2: Misinformation about CAM on SOCIAL Media

A number of published studies have explored health care misinformation on social media, with four studies focusing explicitly on CAM misinformation. In regard to these four studies that specifically explored CAM misinformation on social media, one study looked into the use of social media in the promotion of alternative oncology and data about cancer [34]. The study found social media to be a useful channel for sharing patients' experiences with alternative oncology, but also an ideal environment for spreading false information. Moreover, one study identified Twitter users who were propagating information on CAM treatments claiming to treat or cure cancer and found that cancer treatment misinformation is frequently spread by actors other than patients [74]. Another study that evaluated how hypertension is portrayed on YouTube found that 33% of the videos were misleading and 70% of the misleading videos were about unproven alternative treatments [23]. A similar study that evaluated the reliability and quality of information in YouTube videos on traditional Chinese medicine and inflammatory arthritis found that almost half (46%) of included videos provided misleading information [75]. In regard to the studies that explored health misinformation on social media, one systematic review identified the main health misinformation topics and their prevalence across various social media platforms [76]. Health misinformation was the most prevalent on Twitter and YouTube and on issues related to vaccines and smoking products or drugs. Additionally, one pilot study tracked the sharing of posts containing health misinformation in the Polish language social media [77]. According to the study, roughly 40% of health information posts that were shared contained links that were identified as misinformation. Furthermore, in another study, researchers investigated the dissemination of gynecologic cancer-related misinformation on Weibo [78]. While the majority of gynecologic cancer-related tweets contained medically accurate information, almost 35% of them contained false or inaccurate information. Non-governmental organizations, and public health and government agencies have all been cited as critical in generating the fast response needed to communicate accurate information and rectify misinformation on social media [79,80,81].

Discussion of theme 3: Challenges with social media research in the context of CAM

A preliminary review of the literature found two studies that described the difficulties encountered while conducting health-related social media research. The first study looked at health-related misinformation on Twitter, specifically in relation to alternative medications that claim to treat or cure cancer, and found a multitude of challenges that limited the study's generalizability [74]. These challenges included the difficulty in detecting legitimate personal accounts (as opposed to bots or organizational accounts), accessibility issues such as a visual impairment or other constraints to engaging in social media, and the fact that some health conditions are associated with a social stigma, which may limit their discussion on social media. Another study that explored social media research in gastroenterology highlighted the challenges in reliability and ethical considerations [82]. Specifically, it discussed the excess amount of meaningless data such as data from bots and organizational accounts (e.g., pharmaceutical companies) which can compromise the reliability of results. Furthermore, the study discussed the ethical challenges of conducting social media research, particularly the threats to privacy and informed consent that can occur as data from subjects is often collected without the user's direct knowledge.

Areas identified for further research

We have identified a few areas for future research based on our findings.

Currently, there exists more information on social media about the use of CAM, CAM products, and CAM adverse events than ever before, yet the quality of studies exploring social media research in the context of CAM is unknown [24, 83,84,85,86]. We hypothesize that this research gap can be explained based on a number of reasons, including a lack of academic research funding, the prioritization of conventional medicine research, as well as methodological and ethical obstacles which make it difficult to conduct high quality CAM research [87,88,89,90]. Specifically with regard to methodological obstacles, the physical nature of CAM therapies (e.g., massage therapy, acupuncture) makes it difficult for researchers to construct an acceptable placebo control [89]. With regard to the ethical challenges, informed consent is often difficult to obtain because in CAM-related research, patients are often predisposed to strongly prefer a CAM treatment over a control (placebo or non-CAM) treatment [89]. Patients, health care professionals, researchers, and policymakers all require reliable, credible, and up-to-date information as well as shared experiences and engagement with CAM [87,88,89,90]. This justifies a need for an updated review of social media research in the context of CAM along with a quality appraisal of relevant studies. In addition, while several published studies examined the efficacy of social media as a platform for delivering health care information, to our knowledge, there were none that measured the efficacy of social media as a platform for delivering CAM-related information. Thus, further research is needed to explore the efficacy of social media as a platform for delivering CAM-related information. Furthermore, in addition to future research continuing to examine social media platforms, patient-authored texts in online health forums and medical blogs could offer a valuable resource to further understand individuals’ attitudes and beliefs regarding CAM treatments [91, 92]. Additionally, if a critical appraisal tool is developed, a future direction could include critically appraising social media-related studies.

Moreover, research has shown that group polarization is prevalent on social media platforms involving controversial issues, which limits information dissemination among those with opposing views [93,94,95,96,97]. However, to our knowledge, it has not yet been explored as to whether this is also the case with CAM discussion on social media. If it is the case that the increasingly personalized algorithms on popular social media platforms expose individuals more often to posts that reinforce their beliefs and less often to posts containing novel information, it is possible that the confirmation bias is being magnified [98,99,100,101]. As an example, one study found that social media users who were exposed to health articles that conformed to their initial beliefs were more likely to share the article on social media [102]. Further research should explore the degree to which information is shared among dissimilar individuals on social media in the context of CAM [67, 94].

Strengths and limitations

A main strength of the study includes the fact that multiple bibliographic databases were systematically searched, in addition to the grey literature. Further to this, the title and abstract screening, and data extraction were completed independently and in duplicate. Limitations of this study include the fact that only articles written in the English language were included, thus, important findings from non-English language articles may have been missed. Furthermore, while not a limitation in itself, many of the types of studies included in our review did not utilize commonly used research study designs for which a reporting guideline or validated quality appraisal tool was available (e.g., social media analyses), thus future work is warranted in this area. Additionally, CAM is an umbrella term that represents a very wide range of therapies that differ widely in nature. Thus, while our search strategy and the definition of CAM we used when determining article eligibility were comprehensive, certain types of CAM may have been missed. Similarly, many types of social media exist. Thus, while our search strategy likely captured the most prominent types, some forms of less well-known social media may have also been missed. We also acknowledge that because our searches were primarily restricted to biomedical and health databases, literature from the fields of marketing, strategic communication, anthropology, sociology, and medical humanities may not have been fully captured in this review.

Conclusions

The present scoping review involved a systematic search of the literature to identify the quantity and type of studies investigating the ways in which social media is used in the context of CAM. From 29 eligible articles, we identified three major themes including: 1) social media is used to share user/practitioner beliefs, attitudes, and experiences about CAM, 2) social media acts as a vehicle for the spread of misinformation about CAM, and 3) there are unique challenges with conducting social media research in the context of CAM, specifically regarding collecting a representative sample of data. Additionally, we highlight that while a substantial number of articles are available to practitioners, patients, and researchers, the quality and update frequency for many of these articles vary widely, and until formally assessed, remain unknown. Furthermore, we identify that a need exists to conduct an updated and systematically searched review of CAM-related health care or research resources on social media.

Availability of data and materials

All relevant data are included in this manuscript.

Abbreviations

CADTH:

Canadian Agency for Drug and Technologies in Health

CAM:

Complementary and alternative medicine

CBD:

Cannabidiol

IBS:

Irritable bowel syndrome

NCCIH:

National Center for Complementary and Integrative Health

NICU:

Neonatal intensive care unit

PTSD:

Posttraumatic stress disorder

RCT:

Randomized control trial

SMT:

Spinal manipulation therapy

SSS:

Severity scoring system

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Acknowledgements

We gratefully acknowledge Simran Dhaliwal for her assistance with data collection.

Funding

JYN was awarded a Research Scholarship and an Entrance Scholarship from the Department of Health Research Methods, Evidence and Impact, Faculty of Health Sciences at McMaster University.

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Contributions

JYN: designed and conceptualized the study, collected and analyzed data, critically revised the manuscript, and gave final approval of the version to be published. NJV: collected and analysed data, co-drafted the manuscript, and gave final approval of the version to be published. JS: collected and analyzed data, co-drafted the manuscript, and gave final approval of the version to be published. The author(s) read and approved the final manuscript.

Corresponding author

Correspondence to Jeremy Y. Ng.

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Ng, J.Y., Verhoeff, N. & Steen, J. What are the ways in which social media is used in the context of complementary and alternative medicine in the health and medical scholarly literature? a scoping review. BMC Complement Med Ther 23, 32 (2023). https://doi.org/10.1186/s12906-023-03856-6

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Keywords

  • Complementary and alternative medicine
  • Social media
  • Social networks
  • Scoping review