Collaboration and engagement

Social media is often used in healthcare as a means of collaboration [2, 19]. Digital crowdsourcing was already a common practice prior to the COVID-19 pandemic; during the pandemic, it allowed for collaboration among researchers and the ability to produce scientific research at a more rapid pace. Crowdsourcing allows practitioners to share and discuss information and collaborate on projects with colleagues around the world [21]. One of the most significant collaborative efforts that utilized social media was the establishment of the COVID-19 Global Rheumatology Alliance (GRA). During the COVID-19 pandemic, the organization collected, analyzed, and disseminated data regarding how COVID-19 affected patients with rheumatic diseases. This crowdsourcing began with a single tweet asking the registry to collect data on patient outcomes during the pandemic. Within a few days, over 300 rheumatologists and scientists began to exchange information to establish a registry for collecting and reporting data. As of 2020, more than 30,500 cases had been submitted to the GRA registry. This process resulted in more than 30 original publications [20, 22].

Online communities of practice have also proven to be a means of collaborating and engaging with other rheumatologists who share similar concerns or interests. For example, news stories, journal articles, case studies, and specific topics are shared and discussed in several online rheumatology communities on platforms such as Facebook, Instagram, and YouTube. Moreover, rheumatology journal clubs have been established via social media to discuss trending articles and create interactive experiences [5].

Education and knowledge dissemination

Technology-based learning provides opportunities to distribute high-quality medical education [19]. There has been a shift in learning styles among clinicians and students from traditional didactic learning to interactive online educational content. Formal medical education, such as Grand Rounds, medical conferences, and educational lectures, was disrupted by the COVID-19 pandemic; thus, social media platforms have become an important means of disseminating information and providing continuing medical education for healthcare providers [8].

Katz and Nandi [8] conducted a literature review to better understand the reasons, applications, challenges, and disadvantages of social media-based medical education following the COVID-19 pandemic. They found that Facebook, Twitter, Instagram, YouTube, WhatsApp, and podcasts were the most frequently used social media platforms. As previously stated, each platform offers different tools; thus, these specific parameters allow each site to be used on an individualized basis depending on the specific type of medical education needed.

Free open-access medical education (FOAMed) refers to online medical education tools and resources [23]. FOAMed uses social media for information sharing and online discussions [24], and these resources are widely used among medical students [25]. The FOAMed movement was conceived in 2010 and has continued to evolve; individuals are able to publish blogs and podcasts and receive instant feedback via social media platforms. One such educational activity, “Rheums with a New View,” was developed by My Virtual Clinical Community of Practice and Med Mentors, LLC. The activity took place online as a virtual community in 2021 and 2022 to educate rheumatologists and other healthcare providers caring for patients with rheumatic diseases. This activity was sponsored by the University of Louisville CME & CPD and supported by educational grants from Bristol-Myers Squibb, Gilead, Lilly, Myriad Genetics, and Sanofi. “Rheums with a New View” consisted of four educational modules as well as an opportunity for discussion with faculty and colleagues. The content focused on measuring disease activity, telerheumatology, patient-reported outcomes, and the utilization of a multidisciplinary approach to managing patients. A total of 508 global learners participated in the activity, of which the qualitative outcomes, as stated by the participants, are presented in the following:

• (1)

  The importance of evaluating the whole patient.

• (2)

  An increased interest in offering more telehealth.

• (3)

  The significance of implementing evidence-based care and clinical guidelines.

• (4)

  Improvement in understanding of assessments when caring for patients with rheumatoid arthritis (RA).

Social media platforms for education also offer patients access to educational content as well as the ability to host online communities to share resources. In the USA, many patients with rheumatic diseases engage with social media to share stories, education, and new information. Further, clinicians can also create platforms for patient education and promote connectivity [21]. In summary, social media has become a vital part of interactive education and knowledge dissemination [26].

Research and publication promotion

Social media platforms play a significant role in rheumatological research. Social media allows for collaboration, data collection, circulation of findings, and interactive discussions. For example, organic tweets allow for ever-evolving topics of interest, thereby providing discussions that can publicize and circulate rheumatology research. As another example, “live tweeting” rheumatology conferences were popular before the pandemic; it is a way to promote research and generate discussion [21].

In March 2020, the COVID-19 GRA sought to address issues concerning outcomes for rheumatology patients and potential patients regarding COVID-19. For example, the questions raised were whether COVID-19 could worsen rheumatic diseases and since some of the therapies used to treat COVID-19 were also used for rheumatic diseases, whether those treatments would become difficult for current patients to access. To address these concerns, the COVID-19 GRA collaborated with other patient organizations to develop the Patient Experience Survey. The survey collected individual data from patients and caregivers to examine how COVID-19 affected their ability to manage rheumatic diseases. In April 2020, the Patient Experience Survey received 9,541 responses, with the most common diagnoses being rheumatoid arthritis (25%) and systemic lupus erythematosus (20%) [27]. In total, 4.9% of patients (n = 465) had been diagnosed with COVID‐19 (based on symptoms or positive laboratory tests). This survey shows how social media can support collaboration and data collection when difficult issues must be addressed quickly [27].

One study examined the acceptance, perception, and willingness to participate in the development of social media-based education. The researchers found that 74% of the participants (n = 102) supported the use of social media platforms for article promotion, with the use of visual abstracts ranking the highest (81%) [28]. Visual abstracts present the key points of research articles in an accessible way [29]. Research suggests that graphical and visual abstracts tend to reach a larger audience than text-based ones (or links to the original article), thereby increasing the number of impressions, retweets, and article views [30].

The concept of omnichannel planning, an individualized and integrated means of accessing information among a wide array of interconnected channels, can also be seen within the medical community. For research content, communication must be coordinated beyond traditional print publications. The literature suggested that many researchers discuss publications using their personal social media accounts [16].

Social media has also become an avenue for enrolling patients in research studies. For example, social media can be extremely useful when studying rare diseases as obtaining a considerable sample size may be challenging in a clinical setting [6]. In summary, social media platforms have affected academic healthcare research through collaboration, data collection, patient recruitment, and the dissemination of research findings [16].

An international study conducted by Hmamouchi et al. [31] examined best practices when recruiting patients with rheumatic and musculoskeletal diseases for online surveys. This study yielded 1,595 patients from 19 Arab countries. A total of 711 (44.7%) patients were recruited through anonymous social media platforms (Facebook, Instagram, Twitter, and Snapchat); 647 (40.7%) through their doctor, either directly or via WhatsApp messages from the doctor’s office; and 233 (14.6%) through patient associations; only 15 patients (less than 1%) were recruited through email. The researchers found that the most effective e-recruitment method was personalized WhatsApp reminders. This study also underscored the effectiveness of social media as a means of patient recruitment among younger patients. These findings are in line with those of the current research, suggesting the important role of social media in recruiting patients for research [31].

Clinical practice

Social media has emerged as a technological platform that can affect patient care and care delivery. Using the Technology Acceptance Model (TAM), one study sought to better understand how rheumatologists described the impact of social media on care delivery. The TAM assesses perceived usefulness, ease of use, intent to use, and actual use. In one study that used semi-structured interviews (n = 13), participants indicated that social media and online communities of practice had benefits in terms of patient care and staying up-to-date with new information [3]. This study also utilized the TAM2 scale developed by Venkatesh and Davis [32] to examine the perceived usefulness and intent to use related to social influence and cognitive instrumental processes on a seven-point Likert scale (Table 1) [3]. A total of 23 participants were surveyed, and 86.26% were men. Participants’ ages range from 25 to over 65 years. The majority of the participants are in a private practice setting (63.64%), 27.27% are in an academic setting, and 9.09% are in a hospital setting.

In summary, this study found that social media enables connectivity with colleagues, thus facilitating knowledge exchange and professional interactions. Several participants believed that “ease of use” was a major determinant when considering how social media could affect care delivery [3].

According to Garcia Vivar et al. [33], many rheumatologists were not confident in the use of telemedicine before the COVID-19 pandemic, because they did not have access to technology or there was no reimbursement or training. The researchers conducted a study on biologic therapy among a controlled group of patients with axial spondylarthritis to assess the acceptance of asynchronous telehealth follow-up using the WhatsApp platform. This study included 60 patients (83.3% male). Researchers found that there was a preference for telehealth among those with higher education levels and those who were working (86% vs. 70%), but the difference was not statistically significant. Researchers did not find any correlation with gender, age, or disease characteristics. In summary, although some patients were hesitant, this study demonstrated that asynchronous telehealth appears encouraging. However, further research is warranted [33].

Another study by Venuturupalli et al. [34] examined patient-reported health data from Twitter to identify diverse patients with lupus and examined their views regarding their symptoms and treatment. Between September 1, 2017 and October 31, 2018, the authors located 47,715 public lupus-related tweets from 8,446 users. After analyzing the findings, the authors noted that patients with lupus on Twitter were diverse in both race and gender; thus, disease symptoms and treatment varied significantly. This study demonstrated the role of social media surveillance in providing clinically relevant data from the perspective of patients. Clinicians should use this opportunity to apply these data to a patient-centered care approach, particularly when managing underrepresented patient groups [34].

Barahona-Correa et al. [35] explored the reliability, patient engagement, comprehensiveness, and information quality of videos uploaded to YouTube for Spanish-speaking patients with rheumatoid arthritis. Of the 200 videos examined, the authors deemed 67% to be useful. This was based on the number of views, time spent online, and duration. Notably, engagement was similar for both useful and misleading videos. The authors concluded that while most YouTube videos for Spanish-speaking patients were useful, the development of high-quality multimedia with academic involvement would be beneficial [35].

The quality of YouTube videos on autoinflammatory diseases (AID) was examined in an analysis conducted by Sasse et al. [36]. The YouTube search assessed AID-related videos for quality and usefulness from both clinician and patient perspectives. The examination criteria included video duration, number of views, likes and dislikes, comments, and upload sources. Of the 140 videos screened, 105 met the inclusion criteria for further analysis. Based on the Global Quality Scale, the researchers found that most patient videos were low quality (64.8%), and 27.6% and 7.6% were intermediate and high quality, respectively. These findings were somewhat similar to the clinician videos, with 54.3%, 23.8%, and 21.9% being low, intermediate, and high quality, respectively. The authors concluded that only a small fraction of AID-related patient videos were considered useful; thus, high-quality educational videos are needed for this patient population [37].

Flurie et al. [37] conducted a study looking at patient-reported outcomes from communication via social media among patients with gout. This study explored the impact of different management strategies on the emotional state of these patients. Management was classified as either reactive or proactive. Negative words were more predominant among reactive management statements (59%) than proactive ones (44%). The word “fear” occurred more frequently in reactive statements, while “trust” prevailed among proactive statements. The authors concluded that exploring gout-related conversations on social media might provide a better understanding of the clinical management and emotional states of patients suffering from gout [37].

Patients use social media to search for medical information and connect with like-minded people to share their experiences and stories. Patients can form their own social media groups, which can unfortunately lead to misinformation and non-evidence-based treatment options [38]. Clinicians should recognize the positive and negative aspects of patients’ social media use to develop a shared decision-making approach to care.

Misinformation, disinformation, and the “echo chamber effect”

In the context of social media, misinformation refers to the sharing of information without knowing it is “fake” [5]. Content on social media is often posted hastily, without proper validation. Additionally, plagiarism occurs in many circumstances. Fact-checking plays an important role in determining the validity of social media content and identifying misinformation. However, because posts on social media occur rapidly, it is almost impossible to attend to every piece of health misinformation posted [26]. In a systematic review conducted by Gabarron et al. [40], the researchers found that social media had a substantial effect on the dissemination of both accurate information and misinformation on COVID-19 (misinformation accounted for 0.2–28.8% of posts). The studies included in the review examined the overall effects of misinformation and found that it led to fear and panic. According to the literature, false statements posted on social media during the pandemic led to avoidable hospitalizations and deaths around the world [40]. Misinformation refers to posting content on social media while knowing that the information is not factual, which could, in turn, lead to fear and mistrust [41].

The “echo chamber effect” concerns the idea of biased information and relates to users’ social media content being personalized to match their viewpoints and eliminate opposing perspectives [5]. Individuals often look for information congruent with their beliefs; therefore, seeking like-minded individuals can lead to a confirmation bias [35]. The echo chamber effect was prevalent during the pandemic among anti-vaccine activists who shared emotional distress and conspiracy theories [5].

Privacy and confidentiality

Rheumatologists must recognize issues concerning privacy and confidentiality regarding social media use. Further, identifiable patient information must not be disclosed on social media [5]. This is essential for vulnerable populations, such as pediatric patients and members of marginalized groups. In fact, the release of identifying information can lead to discrimination and/or stigmatization [6]. Privacy is also important when recruiting patients for research through social media. Most social media platforms require individuals to provide personal information to register and participate. This could lead to unforeseen research challenges. Although research ethics boards mandate the removal of identifiable patient information, anonymization of these data may not be satisfactory when attempting to safeguard the privacy of social media networks [42, 43].

Ethico-legal matters

Ethical considerations are crucial in the use of social media. An ethical framework, informed consent practices, and appropriate data management strategies are necessary [44]. While overseeing media and proposing recommendations for social media could conflict with the USA’s free speech laws, several large social media sites have established policies to regulate confusing and/or incorrect information [40].

Social media has created a forum through which clinicians and patients can connect online. It is imperative that both parties recognize the clinician-patient partnership as a professional rather than a social relationship [5]. In the USA, for example, the General Medical Council and the British Medical Association have set forth guidelines for standard expectations for physicians when communicating via social media [45]. That study examined perceptions of doctors’ Twitter activities from doctors, patients, the public, and other healthcare professionals. The researchers examined issues surrounding mistrust using univariate and multivariate analyses. The survey was conducted with 726 participants. In the univariate analysis, a greater number of non-doctors conveyed that they had observed unprofessional behavior and potential violations of patient confidentiality compared to doctors. Moreover, the non-doctor cohort believed that employers and regulators should oversee physicians’ Twitter accounts [45].

Reputation

Around the world, social media affords patients the opportunity to search for and review healthcare providers’ and facilities’ reputations. Providers must recognize the impact of “bad reviews” on social media, as these reviews relate to their overall status [46]. Further, cyberbullying can lead to defamation. Clinicians must understand that offensive posts made previously (even while in school) can always re-emerge, and the resulting conflict can lead to an overall mistrust in the medical profession. Therefore, healthcare providers should respect their colleagues and avoid online harassment [5].