Online professional identity

Physician-specific and academic social networks, such as doximity.com and researchgate.com, are increasingly used as professional networking tools. Nevertheless, social media can also affect physicians and care providers who never professionally or personally use social media. Online profiles allow patients to see and learn about their physicians’ interests and accomplishments. This allows patient insight into the person who will provide care, which may improve patient expectations and comfort. Professional profiles are often compiled by the individual’s institution; however, other information exists as well. Multiple online sites create and publish user-generated ratings of physicians.Reference Gao, McCullough, Agarwal and Jha² These ratings are typically based on the patient’s experience during visits and personal opinion of the physician’s competence. They allow prospective patients insight into other patients’ experience. Reviews range from extremely supportive to scathing and are given from one individual’s point of view only, but sites often compile a composite score of multiple reviews. Providers have no control over the postings or specific avenues to mitigate negative or unrepresentative reviews. Subspecialty and hospital-based providers such as paediatric cardiologists are certainly reviewable, and there is evidence that at least some patients choose their physician based on these ratings.Reference Grabner-Krauter and Waiguny³ Thus, a paediatric cardiologist may benefit professionally from knowing what his/her online reputation is and can work towards improving any practice characteristics that may have led to negative reviews.

Online personal identity

A recent survey of the Facebook pages of 996 surgery residents found that >26% of pages contained potentially or clearly unprofessional content including binge drinking, sexually suggestive photos, and Health Insurance Portability and Accountability Act violations.Reference Langenfeld, Cook, Sudbeck, Luers and Schenarts⁴ The authors’ noted that beyond putting the reputations of individuals at risk, such content represents a risk to the reputation of both the residency programmes and the hospitals in which these residents are employed. As a result of concerns such as these, the American Medical Association’s official code of ethics’ opinion on professionalism in the use of social media states the following: “To maintain appropriate professional boundaries physicians should consider separating personal and professional content online”.⁵ Similarly, the American College of Physicians and Federation of State Medical Boards recommends “maintaining separate personas, personal and professional, for online social behavior”.Reference Farnan, Snyder Sulmasy, Worster, Chaudhry, Rhyne and Arora⁶ Unfortunately, although seemingly a straightforward idea, the actual privacy safeguards on social media sites make the ability to keep personal and professional identities separate functionally impossible – for example, using Facebook’s standard privacy settings, relatively little of an individual’s personal information in 2005 was available to be seen by other Facebook users without permission; however, by 2010, nearly all personal information, including photos, friends and contacts, and all message postings were available to other Facebook users.Reference McKeon⁷ Thus, regardless of whether they are intended to be professional content or not, with standard privacy settings, all pictures and content may be viewed by patients on Facebook. Given that patients only have professional-level contact with the physician, they may view any content as representative of their physician and his/her professionalism. Given this lack of clear boundaries between professional and personal spheres on social media, rather than attempting to maintain separate online identities, healthcare providers should focus on monitoring what content is posted online in any format. This position was eloquently outlined by DeCamp et al in their 2013 viewpoint: “Resolving the online identity crisis requires recognizing that social media exist in primarily public or potentially public spaces, not exclusively professional or exclusively personal ones. Boundaries exist; they simply are not drawn around professional and personal identities, nor can they be. When a physician asks, “Should I post this on social media?” the answer does not depend on whether the content is professional or personal but instead depends on whether it is appropriate for a physician in a public space”.Reference DeCamp, Koenig and Chisolm⁸ Society holds medical care providers to a certain ethical standard in all facets of life, and social media should be viewed as a public space equivalent to any other physical location in which those ethical standards apply.

Patient privacy

It is imperative to recognise that as a result of the public nature of social media, patient privacy must be maintained. HIPAA applies to posting on Facebook, Instagram, and Twitter just as it does in the hallways or elevators of a hospital. Numerous cases exist of healthcare providers who have had their employment terminated over patient confidentiality violations on social media.Reference Wells, Lehavot and Isaac⁹ Particular attention to educating care providers is necessary, because seemingly innocent statements can actually infringe on patient privacy rights – for instance, consider the following Facebook post by a cardiologist: “Sadly, the brave boy from my home town is losing his fight with dilated cardiomyopathy today”. In this case, social media is being used by an individual to express emotion and support, but it is also a violation of patient confidentiality. The posting did not give a specific name, but it did contain specific patient-identifying information, such as gender and address – likely “hometown” can be gleaned from the cardiologist’s Facebook page – and it contained private medical information, the patient is dying from complications of dilated cardiomyopathy. The cardiologist’s social media contacts either at work or in his/her hometown may potentially know the patient’s identity; thus, a violation of patient confidentiality took place. Instances like these are commonplace today, and providers need to be very careful regarding social media posts that pertain to their work.Reference Wells, Lehavot and Isaac^9, Reference Herrin and Ingram¹⁰

Direct patient contact via social media

The issue of patient confidentiality can become even more complicated when patients request to become a healthcare provider’s social media contact. Particularly in fields such as paediatric cardiology, in which life and death issues often create emotional bonds between the provider and the patients or parents, requests to maintain contact via social media may be common. Accepting a patient as a social media contact, such as becoming “Facebook friends”, blurs the line between professional and personal contact. The American Medical Association specifically addressed this issue in their social media guidelines: “If they interact with patients on the Internet, physicians must maintain appropriate boundaries of the patient-physician relationship in accordance with professional ethical guidelines, just as they would in any other context”.⁵ This moves one step beyond maintaining overall behaviour appropriate for physicians and nurses in a public space. In the case of a patient social media contact, the provider must specifically interact with the patient in a professionally acceptable way. As Facebook and Twitter are not typical professional forums, this is not as intuitively straightforward as it is in the clinical setting, and caution and consideration should be exercised. All exchanges over social media need to be viewed as equal to a discussion in the clinic or hospital. Further, becoming a personal contact may allow patients to see personal information at a level that physicians or nurses may feel uncomfortable about,¹¹ which must be considered on an individual basis. Proponents of social media contact between physicians and patients note that social media may give patients insight into their physician as a person, thereby “humanising” and potentially leading to a closer relationship.¹² Allowing social media contact may also allow health communication to take place on the communication platform most frequently used by the patient, leading to an improved reach.Reference Baptist, Thompson, Grossman, Mohammed, Sy and Sanders¹³ Some institutions have specific rules about having patients as social media contacts;¹¹ if they do not, accepting contact requests from patients is at the provider’s discretion. For some, this type of relationship may be very worthwhile, but education about the potential pitfalls of these interactions is necessary.

Patient peer-support and education

Although patient-support organisations for paediatric heart disease have existed for many years, social media’s ability to freely and instantaneously share information with individuals possessing similar interests has led to a proliferation of patient-run education and support groups. Using electronic posting boards, e-mail listservs, and blogs, these groups facilitate contact among members, provide education and disease-specific information, allow members to share experiences and gain peer-support, and even fundraise for CHD charities.Reference Barmash¹⁴ Many sites continue to be general CHD groups, but multiple disease-specific groups have also been organised, leading to even more focussed information and shared experiences. A paediatric heart disease activist who pens the blog scribbleandcrumbs.com described her experiences with social media: “I personally appreciated a page for mass updates for family and friends when I couldn’t handle talking to people individually. Groups were helpful for building a network of people who understood, but for me, more helpful for learning about my child’s future outlook and what potential obstacles he would face. Now, writing and sharing through social media has opened up a lot of doors for awareness and advocacy”.

Advancing productive health agendas

Social media’s free publishing applies to everyone, including physicians and other healthcare providers. Motivated providers can use social media to advance positive, productive healthcare agendas, and engage and educate the public. Although anecdotal, this ability of social media to change public health messages is well illustrated by this experience: during the drafting of a recent presentation, an author ran a Google search on them term “should I vaccinate my child?”. The search results on the first page contained six anti-vaccine sites/blogs and four pro-vaccine sites/blogs; 2 weeks after this initial search, an outbreak of the vaccine-preventable disease measles occurred in the United States and gained significant media attention.Reference Majumder, Cohn, Mekaru, Huston and Brownstein¹⁵ The Google search was repeated, and the initial Google results page now contained seven pro-vaccine sites and three anti-vaccine sites. Upon further examination, the change had been driven entirely by new posts from paediatricians who had chosen to speak out on the vaccine issue using social media as their forum. The online message to a parent searching for vaccine information had changed significantly from anti-vaccine to pro-vaccine simply because physicians took time to post their educated views online. Similar changes in health message can be achieved elsewhere in medicine. If every paediatric cardiologist took time to make a social media posting about an aspect of paediatric heart disease important to him or her, internet searches by anyone seeking information would have an improved view of the scope and prevalence of paediatric heart disease, the degree of clinical investment required for care, the importance of research, and the lack of necessary funding. The online message would change and the public would be better educated.

Rapid information dissemination

Other professional disciplines have changed radically with the advent of social media’s ability to rapidly disseminate information. Approximately 80% of news media now use social media professionally.Reference Willnat and Weaver¹⁶ In medicine, social media can provide alerts to new policy and research as well as higher inter-specialty connectedness and information exchange. A recent study in cardiology sought to determine whether social media could raise visibility of new research. Researchers randomised selected new articles published in Circulation to either the journal’s standard practice of notifications or to have focussed social media alerts.Reference Fox, Bonaca, Ryan, Massaro, Barry and Loscalzo¹⁷ The social media alerts included Facebook posts and tweets with a study summary, study conclusion, and a key figure. The primary outcome was the number of article views on the journal website. Following the study, the authors found no difference in article views between the groups, but they were unable to conclude the true meaning of this finding. It was possible that social media made no difference in article views; however, it was also possible that article awareness increased, but the social media alerts reached a different audience than standard Circulation website visitors, and the alerts were so comprehensive that it was not necessary for readers to view the source material. For now, the question as to whether social media can help increase information sharing in cardiology remains incompletely answered.

Social media as a research tool

Social media’s greatest potential in paediatric cardiology may be as a tool to facilitate and power research. Although traditional medical research has been slow to employ social media, patients have been effectively using it to learn more about their disease for years. Sites such as patientslikeme.com and curetogether.com allow patients to pool, or crowdsource, information regarding disease symptoms, progression, and responses to treatment. Based on information gleaned from many other individuals who share their diagnoses or experiences, patients are armed with new information to discuss with their care provider. Although acquiring information in this manner does not follow traditional research methodology, it clearly has potential as a modality to rapidly gather information. Medical researchers have now noted this and have begun to use the same sites to effectively answer research questions. A recent study of patient information on patientslikeme.com regarding lithium use in amyotrophic lateral sclerosis patients produced nearly identical results regarding the medication’s efficacy than clinical trials did significantly later.Reference Wicks, Vaughan, Massagli and Heywood¹⁸

Social media as a research tool may be at its best in powering studies of rare diseases. In the United States, a disease is defined as rare if <200,000 individuals in the total population are afflicted, which qualifies many of the conditions seen in paediatric cardiology as rare. Paediatric cardiology providers also deal with diseases that are exquisitely rare, such as Fontan-associated protein-losing enteropathy and plastic bronchitis.Reference Schumacher, Stringer and Donohue¹⁹ Similar to many very rare diseases, knowledge regarding the pathogenesis and treatment of these conditions is limited, and this limitation is driven by the lack of sufficient patients for study using traditional methods. Thus, the majority of publications regarding protein-losing enteropathy or plastic bronchitis is limited by very small patient numbers or the need to include many historical patients not necessarily representative of patients today.Reference Schumacher, Singh, Kuebler, Aprile, O’Brien and Blume^20, Reference Mertens, Hagler, Sauer, Somerville and Gewillig²¹ Nevertheless, in the social media era, patients with both of these diseases have clustered virtually online in much larger groups than have ever been available at any single centre. At our centre, we recently conducted a research study of protein-losing enteropathy and plastic bronchitis powered by social media.Reference Schumacher, Stringer and Donohue²² We hypothesised that patients clustered online in numbers sufficient for a study, and that if research prospectives were offered to them, patients would participate and actually drive recruitment. A novel survey was designed and piloted that captured data on demographics, medical and surgical history, protein-losing enteropathy and plastic bronchitis-specific history, and disease treatment; it was specifically designed so that non-protein-losing enteropathy or plastic bronchitis patients could also participate. The survey was placed online on a standard webpage and a Facebook page. Within 1 year, participation was high enough to make it the largest ever study of current Fontan patients, patients with protein-losing enteropathy, and patients with plastic bronchitis. The disease-specific information obtained included novel risk factors for developing protein-losing enteropathy or plastic bronchitis and pointed at the lack of standard approaches to treatment. Although there are limitations in the type of medical information patients may provide, this type of patient-centred information is exceptionally helpful in designing future research or clinical endeavours. In our case, it led to discussions between centres regarding the need for a unified approach to disease treatment and establishing clinical best practices. Perhaps more interesting than the disease-specific information was the data obtained on how study participants found and enrolled in the study. Greater than 84% of the 671 participants learnt of the study via social media. Participation was not constant or linear over time but came in bursts as knowledge of the survey reached new social media communities. Participants drove recruitment by themselves. The study was virtually cost-free and took 1 year to complete.

The potential benefits of this type of research are beginning to spur new endeavours in paediatric cardiology. Although no other study utilising similar methodology has been published, our group has been involved in discussions of many other potential studies of rare cardiac diseases or problems utilising similar methods.²³ Further, discussions have begun regarding building sustained, disease-specific, social media-based research communities in which researchers partner with patients and parents to identify and conduct studies to address problems deemed most necessary by all involved parties. The eventual scope and impact of these studies are yet to be determined, but the potential to rapidly advance knowledge in paediatric cardiology is certainly exciting.