There has been an inexorable increase in digitization over the last 2 decades. Over the years, internet use has remarkably developed, in a way that its use has become effortlessly easy. Websites have been developed into user-friendly apps, mobile phones have become smartphones, and internet coverage has become broader than ever. Interactive websites (Web 2.0) are increasingly overshadowing traditional static websites. Web 2.0 is a term that refers to different types of websites and applications that allow any user to generate content and share it on the web in a web-based community. Social media is a type of Web 2.0 that has been recently introduced as internet-based websites and apps, where user-generated content is created and conveniently exchanged with other users [1]. It is designed as a space for people to obtain information, share experiences, build communities, connect electronically both informally and professionally, and link them to others with common interests, which led to the emergence of the term self-media. Users generally need to create a profile or account on the vector and then determine with whom to share it, whether it is a list of known users with similar interests or a broader public community that has access to the vector.

As the consumption of social media has grown, it has become an essential tool used in many industries. In health care, traditional services have been complemented by social media. A simple search on PubMed with the words social media would yield several studies, reflecting how relevant the topic is to health care. Although the vast majority of studies investigated social media from the perspective of a health care provider (HCP), there is an abundance of studies that investigated how patients and the public are using it as a resource to supplement traditional health care. Studies varied in their aims, designs, and methodology, and presented mixed findings. Although most studies found promising results, some findings highlighted several limitations and negative issues regarding the use of social media by patients [2-8]. Most included reviews have focused on 1 or 2 main domains of the use of social media in health care such as telemedicine and smoking cessation [9,10]. To our knowledge, no review has holistically discussed the use of social media from the perspective of a patient. In this narrative review, we try to answer the question, “In what ways have patients used social media in relation to health care?” by accumulating, summarizing, and reorganizing findings from published literature.

This review aims to discuss how social media has been an essential tool in the health care industry from the perspective of patients. The discussion is supplemented with a discussion on issues pertaining to the use of social media and the ethical considerations that emerged from the literature.

This review is a continuation of the findings presented in Social Media and Healthcare, Part 1: Literature Review of Social Media Use by Health Care Providers, which discussed the use of social media in the health care industry from the perspective of an HCP [11]. The original plan was to conduct a general review on the use of social media in health care. Owing to the abundance of information, a decision was made to divide the findings into 2 reviews.

In the first phase, a comprehensive search on PubMed, Google Scholar, and Web of Science was conducted in March and April 2020 for medical publications on the use of social media in health care in English from 2007 to date. A combination of the following keywords was used to search for relevant articles: social media (Medical Subject Headings [MeSH] term) OR social networking/social network OR internet (MeSH term) OR Instagram OR Facebook OR WhatsApp OR LinkedIn OR YouTube OR Twitter AND health care OR health (MeSH term) OR medicine (MeSH term) OR physician (MeSH term) OR nursing (subheading) OR dentistry (MeSH term) OR telemedicine (MeSH term), recruitment, OR education (subheading) OR career OR behavior/behaviour (MeSH term) OR research (MeSH term). As studies emerged, a second search was conducted in June 2020 with the following combinations: social media (MeSH term) OR social networking OR internet (MeSH term) AND legal liability (MeSH term) OR professionalism (MeSH term) OR impact (MeSH term) OR ethics (MeSH term) OR limitation OR harm.

An EndNote (EndNote 20; Clarivate Analytics) library was created, in which the articles were entered and duplicate publications were removed. For articles to be included, they had to (1) be about social media and health care from the perspective of patients; (2) be in the English language; (3) have accessible full text; and (4) be published in 2007 or later. Exclusion criteria were as follows: (1) abstracts only, without full text; (2) non-English; and (3) irrelevant, such as those discussing social media use from the perspective of an HCP or the use of non-Web 2.0 applications. Reviews and observational and experimental studies were included, with no exclusion based on the study design. The eligibility of the titles and abstracts was also assessed. Finally, the full texts were retrieved. Manual reference screening of the included studies was performed to locate other relevant articles.

On the basis of the key outcomes, articles were initially divided into two groups: patient/the public and other relevant issues. As more information was obtained, the latter was further divided into two groups: issues pertaining to social media use in health care and ethical considerations. Issues pertaining to social media use in health care covered studies on the limitations, negative effects, and harms of use of social media in health care that emerged from the literature. Ethical considerations presented information about legal and ethical issues pertaining to the use of social media in health care.

To best present the findings, the group titled patient/the public was subsequently divided into 4 subgroups. The first subgroup was health information; although this point was discussed in the first review, in this part we have discussed how patients receive information, rather than how HCPs disseminate it. The second subgroup was telemedicine; issues pertaining to the use of telemedicine by patients were discussed. Finding an HCP was the mirror image of the group named career development/practice promotion, which was discussed in the first review. In the previous review, we discussed how HCPs use social media to market themselves and their practice, whereas in this study, we explored the impact of this on patients’ decision-making. The fourth subgroup was peer support and sharing experiences, which was unique to patients and the public, and discussed how social media is used among patients for compassion and as a digital word of mouth.

In the first review, a section titled influencing positive health behavior was comprehensive. After reviewing it, a decision was made to move it to this review as a fifth group, as it was more relevant to patients than HCPs.

In this section, the search results in terms of the included publications are presented. The findings pertaining to the content of the individual studies were categorized and are presented in the Discussion section.

A total of 7387 articles were retrieved from the search, and after removing the duplicate articles, 5683 (76.93%) articles remained. A total of 85.53% (4861/5683) of articles were marked as ineligible and were thus excluded. An additional 13.07% (743/5683) of articles were excluded after title and abstract screening based on the inclusion/exclusion criteria, and 0.07% (4/5683) were irretrievable. The full text of 1.31% (75/5683) of publications was screened and included. Owing to the daily emergence of relevant publications and reference screening, 16 more studies and 1 textbook chapter were added as the review proceeded by updating the search. A total of 91 articles and 1 textbook chapter were included in the analysis. Figure 1 shows a flow diagram explaining how the final inclusion was attained after the selection procedure.

Figure 2 shows the number of included studies per publication year, with more than half of them published in the last 5 years. In terms of geographic location, the 91 publications were distributed as follows: 40 (43%) from the United States, 6 (6%) from Canada, 2 (2%) from Latin America, 10 (10%) from the United Kingdom, 13 (14%) from Europe, 8 (8%) from the Middle East, 1 (1%) from India, 7 (7%) from Asia, and 4 (4%) from Australia.

The included publications were complemented with web references and a textbook chapter. Original studies accounted for 42.8% (39/91) of the cited references. The remaining publications were meta-analyses, systematic reviews, narrative reviews, coping reviews, short communications, commentaries, viewpoint papers, and overviews. The social media platforms specifically investigated in some of the studies were Twitter or Weibo (n=1), WhatsApp or WeChat (n=10), Facebook (n=6), YouTube (n=2), Instagram (n=3), and blogs (n=1). Multimedia Appendix 1 [1-91] provides characteristics of the included 91 studies in chronological order.

All relevant information regarding the research question was extracted and summarized from the included studies. Information was then categorized into the emerging themes, as presented in the review: (1) social media use from the perspective of patients; (2) issues pertaining to the use of social media in health care; (3) ethical considerations; and (4) public health implications. The retrieved information was then qualitatively synthesized in the discussion for each category.

HCPs and patients typically represent the 2 ends of most health care relationships. HCP is a term used in this review to include physicians, dentists, nurses, medical or dental allied personnel, and health care organizations, whereas patients is a term used to include patients under the care of an HCP and the public. There is overlap in the ways HCPs and patients use social media. In the following section, only information unique to the perspective of patients, which has not been covered in Part I, is presented [11]. Collaterally during the search, studies that investigated ethical and legal considerations in the use of social media and others that discussed its shortcomings and barriers have emerged. These points have also been briefly discussed.

There will always be a positive and a negative side of using social media in health care [62]. Although social media has been heavily used by health organizations, medical personnel, patients, and the public, in general, its use is associated with barriers, limitations, and shortcomings. First, internet connectivity is required to access social media. Despite the widespread use of the internet worldwide, 41% of the global population still has no access to the internet [97]. Unfortunately, low-income families and individuals with disabilities are less likely to use the internet, resulting in further exclusion of individuals who are already marginalized [63] Second, some degree of technology skills is essential to enter the digital world. Although basic skills are not very difficult to acquire, digital literacy can be challenging for some populations, such as older adults and individuals with intellectual impairment [64].

Some studies have investigated the shortcomings of technology-mediated remote health care. Inefficiency of web-based medical visits compared with face-to-face engagements has been perceived [65]. A dermatology study found that the quality of the images obtained in group discussions was inconsistent [66]. There is also a fear that patients enjoying the convenience of telemedicine are deterred from visits to the hospital when necessary [14,67]. Moreover, financial limitations should be considered since e-consultations and web-based visits may not be covered by insurance companies [14].

Connections established through social media may dissolve the boundaries between professional and personal lives [68]. A recent study found that patients often extend internet friend requests to their physicians on Facebook; however, recommendations often discourage personal web-based communication between practitioners and patients [40]. Personal boundaries may be violated by inappropriate curiosity, as social media can provide a wealth of information about its users [25,69]. Patients may have unrestricted access to the personal information of HCPs available on the internet, and HCPs also have access to patient information that may not be available in the health care setting. Nevertheless, patient information received from web-based sources may be helpful in certain health care settings; for example, HCPs may observe a lack of adherence to medical recommendations and may alter management accordingly [18].

In social media communication between patients and HCPs, there may be frequent interruptions; the false sense of having to be available 24/7; disparity on urgency; compromised verbal communication and body language, especially in texting services; noncompliance with specific terms of a social media platform; lack of proper guidelines for group moderators to manage discussions and controlling content; difficulty in obtaining printed records of communication; and no accurate records of all web-based encounters in the medical records of the patients [27,70,71]. There is also the possibility of identity theft, since any user can create an account, use any name and profile picture, and claim to be someone else. For instance, the logo of the American Society of Colon and Rectal Surgeons was used by a hospital in a different country to request an endorsement [8].

Social media is a double-edged sword for HCPs. As fast as a positive review travels, so does a negative one. Patients unhappy with a service, payment, treatment outcome, or legal actions may start a war against the practitioner or practice. Teaming up with more keyboard warriors or internet trolls can have a disastrous emotional and professional impact on HCPs. In 2016, a well-respected orthopedic surgeon was awarded US $480,000 in damages for defamation after continual vilification by a patient and her kin through a website and social media. The defamatory material included a fake shaming website that greatly resembled the legitimate business website of the surgeon, on which they referred to him as the butcher. Similar materials were posted on a couple of social media platforms such as Facebook, YouTube, and Pinterest [98].

HCPs usually support and defend one another. However, some may find social media a good medium to begin a battle against a competing HCP, justifiable or not. Negative professional criticism, displayed publicly on social media, is a violation of the medical codes of ethics; it expresses ill will and aims to tarnish the image of one’s professional colleagues. Destructive negative criticism of colleagues on social media damages the medical profession and its reputation. On a positive note, digital shaming is unlawful in many countries and may lead to legal consequences [99].

Although it comes at a relatively low cost, the volume of information on social media may be overwhelming. In addition, the information can be unreliable, difficult to prove as valid, vary in quality and consistency, outdated, not subjected to peer review, invalid, incorrect, not applicable to all situations, not generalizable, opinions and preferences presented as facts, or entirely false [14,38,72]. This is a public health threat, the effect of which is difficult to quantify. It can be difficult for inexperienced HCPs and the public to discern reliable information; thus, there is a risk of absorbing both valid and less credible information. With digital media, social media in particular, misinformation can be easily amplified within echo chambers, which consist of individuals with similar mindsets and beliefs [73]. With artificial intelligence incorporated into technology, algorithm-driven filters selectively display content based on user preferences [73]. For example, a mother who is uncertain about vaccinating her child may join a group of antivaccine mothers to learn more about their concerns. Not only would she be bombarded with antivaccination information, from that point on, antivaccination related information will be targeting her on several social media platforms, fostering antivaccination which may not be at her nor her child’s best interest.

It is a fact that public voices disseminating inaccurate health information are usually far better heard and related to than evidence-based knowledge from experts and official health organizations [74]. It was noted that disinformation travels at the same speed that information does, which is why some organizations and authorities have dedicated time and effort to fight myths and disinformation in social media platforms, as seen in the exclusive website section of the World Health Organization dedicated to myth-busting COVID-19 disinformation [72,75]. Another negative consequence of social media is the poorly defined audience; information shared by HCPs may entirely miss the target population. Moreover, with social media, there is a risk of early adoption of unvalidated research and preliminary findings that carry a risk of future medical reversal, which would create more hesitancy in the public and HCPs alike [73]. Another major problem in publishing scientific information on the web is that the user may have hidden conflicts of interest that are not disclosed. It is crucial that every effort be made to critically appraise the information available on social media.

The rapid speed at which information travels may have a very negative impact on the general well-being of the public. For example, disseminating alarming and exaggerated information, misinformation, and manipulated information about COVID-19 may cause fear, anxiety, undue stress, and depression at a societal level, even in individuals without underlying psychiatric illnesses [72]. People may also publicly share their negative feelings, such as anxiety, worry, and conspiracism on social media. Such posts may have a contagious effect. At the beginning of the COVID-19 pandemic in the first few weeks of 2020, a study in China surveyed over 4000 participants. Frequent exposure to social media was associated with high odds of anxiety and depression in the general population as well as among health care workers [5]. Another study found that 53.8% of respondents expressed encountering a moderate or severe psychological impact from the COVID-19 pandemic [76]. Furthermore, a UK study found a positive relationship between the use of social media as a source of information on COVID-19 and conspiracy theory beliefs, especially among younger participants [77].

Being highly influential and used by a large young population, social media may also promote unhealthy habits such as tobacco and alcohol use, violence, unhealthy dietary choices, and high-risk sex, especially if they are promoted by digital community leaders (ie, influencers) [70,78,79]. Furthermore, enforced advertisement on social media and the subconscious messages of what looks good through seductive photographs may have negative unintended consequences for body image and self-esteem in some users and could provide patients with unrealistic expectations for treatment [80]. The public is usually unaware that practitioners showcase successful outcomes selectively and that the pictures may not reflect the true skills and proficiency of a practitioner [71]. This may discourage students and recent graduates who may have not yet obtained the skills of experienced HCPs. Some social media groups are based on misconceptions and can be misleading to the public, such as groups that promote freedom to take off the masking during the COVID-19 pandemic. However, social media platforms have begun taking action to limit discussions of that sort [74].

Posting photographs of procedures and before-and-after photographs in a reasonable amount may be beneficial and educational; however, some practitioners make it a goal in itself. If overdone, these posts lose their educational value and become unprofessional advertising and marketing tools [80]. In addition, the pressure to be socially accepted and celebrated, especially through social media, may be difficult to handle. Some individuals, including HCPs, measure their self-worth and seek validation from feedback on social media (eg, number of followers, retweets, and likes). Social media users whose self-confidence is lacking can become more anxious or depressed, which will lead to less self-confidence and erosion of self-worth. It is advisable that HCPs re-evaluate the value of social media if it starts to affect them negatively. It might be advisable to cut back or opt-out all together. Just as it applies to the public, if HCPs are psychologically impacted and struggling, it is better to seek professional help early on.

Although the use of social media among adolescent patients has been shown to be effective in promoting positive health behaviors such as increased physical activity and smoking cessation, the negative impact of social media on the mental health of young people cannot be neglected [50,60]. There is evidence to support less use of social media as a protective factor for mental health in young people [81,82]. In recent years, cyberbullying has emerged as a threat to the mental well-being of young people. A 2015 review found a consistent relationship between cyberbullying and depression among adolescents [83]. In another review, victims of cyberbullying were found to be affected by worry, fear, depression, and loneliness [7]. It was also found that being a cyberbullying victim was associated with more self-injurious behaviors and suicidal thoughts. In the 2019 study by Viner et al [84], the authors analyzed data from the Longitudinal Study of Young People in England and found that the frequent use of social media by young girls was associated with decreased well-being and increased psychological distress. However, they also found that the negative impact of using social media appears to stem from the harmful content users are exposed to and the displacement of healthy lifestyles rather than social media use per se. A review in 2017 found that social media use substituted social interactions, leading to depression and anxiety [7].

A major problem with social media use is that the content posted is prone to be judged and evaluated by whoever sees it. The judgment can be very subjective based on the rater and may reflect unfavorably on HCPs. The trust of patients may be shaken over one bad or inappropriate post. There are no clear guidelines about e-professionalism and what is considered appropriate; it is inherently subjective [85,86]. A review by Neville and Waylen [27] displays practical examples of e-professionalism that help simplify the concept. The digital footprint has an impact not only on the reputation of the user but also on the profession. Postings on social media can be a permanent record, even after the content is deleted.

Social media posts can be viewed by a large audience base beyond the intention or imagination of users [38]. Employers, program directors, and health officials have the authority to discipline HCPs for unprofessional behavior or breaches of patient privacy, which may ultimately affect the credentials and licensure of the practitioners [20,40,87]. Even appropriate posts may be unfairly scrutinized and negatively judged when viewed out of context. There is also the problem of conflicting timestamps, such as a tweet or a post shared at a time when the HCP was in the middle of a procedure or should have given greater attention to a clinical situation, which could be very damaging to a jury of peers and the public’s opinion [8].

In the United Kingdom, 45% of pharmacy students stated that they have posted content on the web about which they are not comfortable with future employers seeing [88]. In addition, about 60% of medical schools reported incidents in which students posted inappropriate content on the web [20]. Furthermore, over half of the medical students surveyed in one study admitted to having embarrassing Facebook photographs of themselves [89]. In a study by Langenfeld et al [86], 12.2% of residents had had clearly unprofessional behavior on Facebook, such as Health Insurance Portability and Accountability Act violations and binge drinking; an additional 14.1% demonstrated potentially unprofessional behavior, including political statements and the use of alcohol and tobacco [86].

Social media communications with or about patients can lead to a breach of privacy and anonymity of patients, which may result in legal actions against HCPs and their institutions. To avoid legal consequences, any post about patients, whether in text, video, or image, should be deidentified, in accordance with Health Insurance Portability and Accountability Act regulations [25]. It is advisable to always obtain consent before sharing any patient information, even if the content is anonymized [71,90]. In 2011, an emergency physician discussed patient care on Facebook. Although she did not identify the patient, she shared enough information to make identification easy to others in her community. As a result, she was fired [100]. In 2016, a pediatric anesthesiologist made inappropriate political comments on Facebook and was ultimately fired from the University of Colorado [101].

It is paramount that HCPs realize that professional demeanor is expected on the internet as in real life. Although no formal contract is established between HCPs and patients in the web-based world, the same rights and responsibilities traditionally applied should be considered on the internet. In 2013, an obstetrician made unsympathetic comments about an always late patient. She accidently made them public. The post and subsequent comments became viral and was featured on the news. Thousands of people petitioned, and the physician endured several professional and personal consequences, but she was not fired from her practice [102]. In another instance, a patient complained to the media about a hospital in California; in retaliation, the hospital disclosed information about the patient to the media without permission and was ultimately fined US $275,000 [103]. In April 2020, an emergency physician in Washington was fired after criticizing his hospital for its COVID-19 response on social media [104].

There are several other issues pertaining to ethical considerations when using social media in health care. One example is the recruitment of minors on social media for research purposes. It is not difficult to locate and recruit research participants below the age of 18 years on social media. However, individuals below that age have not reached cognitive maturity to make thought-through decisions regarding participation in research. Obtaining parental consent or targeting parents may be a more ethical alternative [18]. Another example is falsifying images posted on social media. Photographic technique artifices, such as modifying angles or digitally altering photographs to exaggerate treatment outcomes, is deceiving to patients and is considered unethical abuse [80].

As the use of social media by HCPs has increased, health authorities have published guidelines and recommendations for the use of social media. For example, in 2011, the American Medical Association published its policy on professionalism on social media [91]. Later in 2013, the General Dental Council in the United Kingdom published a document titled, Guidance on using social media [105]. It is imperative that medical curricula tackle e-professionalism, professional internet etiquette, and digital ethics, as the use of social media in health care is the new norm among the millennial generation of HCPs. For more information, it is recommended to read the review by Langenfeld and Batra [8], in which recommendations for e-professionalism have been proposed. In addition, refer to the guidelines on the use of social media that have been summarized by Dhar [71].

Social media has the potential to transmit health-related information and promote health to the public. Striking the right balance between digital and traditional health care is imperative. Social media is omnipresent in our lives today, and the best guard we have is to be acquainted with it and practice due diligence in using it to our favor for the promotion of health care. Nevertheless, HCPs, patients, and the public in general need not forget the risks to which they may be exposing themselves. As medical professionals, HCPs are bound to ethical principles toward their colleagues, patients, and the public in the digital as much as in the real world. Whether e-professionalism is formally taught, ethics is a matter of choice.

Despite its comprehensiveness, because of this review being a narrative review, it is descriptive in nature and did not include a formal appraisal of the included studies. Data from the included studies were summarized and reorganized but not analyzed. Although our search was comprehensive, some relevant studies may have been unidentified. Bias may have occurred in selecting and assessing the literature, as it was not done in a systematic manner, giving the type of review.

This narrative review aimed to discuss how patients have been using social media in the context of health care and describe the main issues pertaining to its use in health care. As can be seen, multidimensional health care, such as when pairing health care with social media and other forms of communication, has been shown to be very successful. The outcome is maximized when the audience is reached numerous times, in multiple settings, and from various sources. The number of digital natives is increasing and will continue to grow in health care settings. Thus, it is advisable to acknowledge that social media will remain an essential part of health care for many years.

Despite emerging evidence that the use of social media has facilitated health care, it has not and will probably not entirely replace traditional health care. The use of social media is associated with barriers, limitations, and shortcomings that continue to emerge in the literature. To maximize the benefits while minimizing compromise to the care provided and avoiding liability, HCPs and patients must perform due diligence before considering social media in health care and should make educated judgments on a case-by-case basis.

As social media is a relatively recent occurrence, more research is needed to determine its long-term effectiveness and to find the best strategies that would maximize its advantages while limiting its risks. e-Professionalism and the ethical considerations in using social media in health care can be further explored.