The first ‘tweets’, from an operating room were in 2009, were from a patient hoping to share his experience and alleviate some of his own, and others, anxiety about the operation[4
]. Robert Hendrick was able to keep people up to date during his entire varicose vein procedure. Mr. Hendrick stated that by keeping people informed of what was going on, he was able to focus his attentions away from the procedure and that he had access to the support of friends and family. In an e-mail after the procedure, he said “I wanted a record for other people who might be interested in the same surgery. It later allowed me to connect with others with the same issues.” [4
]. Mr. Hendrick went so far as to also post pictures and videos of his procedure.
One of the primary concerns with social media in health care is breach of confidentiality, for both patient and physician. Health care workers may accidentally post personal information about a patient. Doctors, calling on colleagues for advice, may forget to anonymize images prior to sharing them. While many of the networking sites claim, or do not claim, privacy and security, their standards may not be sufficient for medical information. Physicians have been investigated when details were revealed from social networking entries that also caused a loss of trust with their patients [8
As part of HIPAA, health care workers are all taught to not disclose any, especially sensitive, patient information. If something slips out, perhaps in the elevator ride between floors, damage is done, but it is still contained. With the power of social media, information rapidly disseminates over a large area; the problem grows considerably. The information is now accessible to many more people, and can be electronically traced back to its source. A Mississippi health care worker was placed on suspension and eventually resigned after responding to a tweet by the governor, in which she indirectly referenced a Saturday appointment the governor had 3 years earlier, in which staff had to come in during off hours to provide the service [9
]. While no direct personal health information was posted, her actions were enough to trigger a response from the institution.
Physicians also need to be on guard when they are on the other side of the table, i.e., as a patient. A woman in Quebec lost insurance coverage for major depression, after going on vacation at her doctor’s suggestion and from other posted events [10
]. She had posted pictures showing her smiling and having a good time, which were found by her insurance company. While the company denies terminating coverage based solely on the information from these sites, they clearly make use of the information when analyzing claims. In 2008, a Federal court had a patient provide e-mail, diaries, and online-shared information to an insurance company when they were trying to identify the etiology of her eating disorder. More recently, a judge allowed a defendant access to the plaintiff’s Facebook page in a personal injury lawsuit, including backed up deleted material [11
Professional Organization Guidelines
In the late 1990s, the American Medical Informatics Association set forth a task force to create guidelines for e-mail use between patients and physicians [12
]. While e-mail is not, strictly speaking, the same as social networking, it does parallel it with respect to security concerns and etiquette. Their guidelines outlined expectations for e-mail turnaround time, content, and limiting use to non-emergent communication. At the time, e-mail was not considered secure given the lack of encryption. Even with today’s sophisticated encryption algorithms, sensitive information such as HIV status or news of a new cancer diagnosis should not be sent over e-mail, not just because of security considerations, but also as a basic rule of etiquette. Discussions of that magnitude should happen face to face, where the patient can have a chance to immediately interact with the physician.
The group also stressed making e-mail use part of or a separate informed consent process. The physician would need to detail who would be reading the e-mails, what were appropriate clinical indications to escalate to another form of communication, and other security measures that would be taken. As clinicians could undoubtedly receive many e-mails a day, a nurse or other assistant would likely be triaging the e-mails to help. Non-clinical, administrative questions could be sent to the front desk or office manager. Non-urgent clinical questions could potentially be fielded by the nurse. At that time, the Task Force recommended all e-mail communication be printed and put into the patients chart for posterity. Today with electronic medical records, it would be possible to import the information, requiring fewer physical resources.
These guidelines, as well as others outlined by the group, can be aptly applied to the use of online social networking. Non-clinical, administrative questions could be handled in a social networking forum. Non-urgent clinical posts could be responded to, via a non-public method by a nurse, or an appointment could be made for the patient to see the doctor. One would not want to discuss sensitive patient information on a public or semi-public forum. Also, physicians must avoid frustration, sarcasm, or libelous remarks, both in e-mail and social networking situations. Remarks in these public to semi-public venues will likely remain for posterity, having the potential to ruin a doctors standing in the community. In a recent Wall Street Journal article, Erich Schmidt of Google went as far as suggest, given the information stored in social media sites, that our youth would “one day will be entitled automatically to change his or her name on reaching adulthood in order to disown youthful hijinks stored on their friends’ social media sites.” [13
In mid-November 2010, the American Medical Association (AMA) released a set of guidelines specific to social networking. They also stressed the need to safeguard personal information to the fullest extent possible and suggested active monitoring of physicians’ internet presence. Additionally, they proposed that physicians also police themselves, stating “When physicians see content posted by colleagues that appears unprofessional they have a responsibility to bring that content to the attention of the individual, so that he or she can remove it and/or take other appropriate actions. If the behavior significantly violates professional norms and the individual does not take appropriate action to resolve the situation, the physician should report the matter to appropriate authorities.” [14
Effects on the Doctor–Patient Relationship
The Indiana University School of Medicine has published social media guidelines for their medical students and physicians in training. They stress physicians need to be very careful in using these sites given their “unique social contract and obligation”. Many of the policies outlined in those guidelines express the need to maintain professionalism, to retain maximum privacy of online profiles and to exercise discretion in what is written about; physicians’ words can potentially carry more weight than those of the general public. Also, as typed words often do not carry the nuances of spoken language, comments could easily be misconstrued, damaging credibility both as an individual and as a health care provider. In fact, the guidelines explicitly state that physicians should not interact with patients on these sites as it “provides an opportunity for a dual relationship, which can be damaging to the doctor–patient relationship, and can also carry legal consequences.” [15
]. Some social networking sites allow for two different profiles; a professional one, and a personal one. If a doctor wished to have a social networking presence, this separation between profiles may be necessary [14
The use of social media could cause one of two effects on the physician–patient relationship. Firstly, it could erode this relationship by further distancing patients from their doctors, lessening face-to-face interaction. The physician becomes a distant authority figure and less of a fellow human being. These face-to-face interactions foster trust and mental well-being. Radiologists have been relegated to the dark corners of the hospital, almost never to be seen by patients, with our technology clearly acting as a buffer between the groups. Edward Hallowell writes in the Harvard Business Review, regarding times when there is decreased human interaction: “In the worst case, paranoia fills the vacuum. More often, the human moment is replaced by worry.” [16
]. Again, this is because the electronic interaction removes our normal social cues, making it easier to misinterpret the incoming information. While technology keeps pushing forward the boundaries of science and our methods of communication, we cannot lose sight of the simple fact that we are entrusted with taking care of people. And that requires person-to-person contact.
The second possibility is that the technology can help equalize power in the patient–physician relationship. Power distance is the “extent to which power, prestige and wealth is unequally distributed with in a culture” [17
]. Aviation research into crew resource management has implicated cultures with high power distance index as a causal factor in plane crashes [18
]. Co-pilots feel uncomfortable directly confronting the pilot, as culturally the pilot is the authority figure in charge and the co-pilot is the subordinate, leaving the co-pilot to resort to more indirect means of raising concern. In the physician–patient relationship, physicians traditionally hold the power as they are considered the learned or authority figure. If the patient feels intimidated or does not want to appear stupid in the physicians’ eyes, it can be difficult for the patient to speak his or her mind or to ask questions concerning his or her health. In many ways social networking can help reduce this distance by empowering and educating patients. Information is accessible to everyone, at any time. The rate limiting step to this empowerment is access to the technology however. Reducing power distances to patients have shown to improve patient confidence in starting, stopping, or making changes to treatment regimens [6
Social networking can allow for leveraged knowledge of masses, and thus reduce power distance in the doctor–patient relationship. But what if the information is wrong? Social media is an amazing tool for disseminating information, but on many of these sites there is no attempt at verifying the truth of the material that is being disseminated. The quality of the information must be brought into question [19
]. Greene et al., found non-FDA approved drug advertisements, “recommendations”, and other fake testimonials that were planted by unknown third parties posing as diabetic patients on Facebook forums. The internet does not have people verifying data, defending truisms or refuting falsehoods. Reputable news organizations have been burned by assuming a posting online or submitted story was true without going through basic fact checking [20
]. Patients and doctors are vulnerable to the follies of misinformation. Physicians, however, have the advantage of basic science knowledge, better access to peer reviewed literature, and training on integrating these pieces of information. We are taught to read the primary literature, analyze it for strengths and weaknesses, and assess applies to our patient population, not just listen to sound bites on the radio or read someone else’s option in the newspaper.