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Sounding Off on Social Media

The Ethics of Patient Storytelling in the Modern Era

Wells, Deva M.; Lehavot, Keren PhD; Isaac, Margaret L. MD

doi: 10.1097/ACM.0000000000000668
Perspectives
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Use of social networking programs like Facebook and Twitter, which enable the public sharing of diverse content over the Internet, has risen dramatically in recent years. Although health professionals have faced consequences for clearly unethical online behavior, a relatively unexamined practice among medical students is the disclosure of patient care stories on social media in a manner that is technically compliant with the Health Insurance Portability and Accountability Act, yet is ethically questionable. In this Perspective, the authors review three such cases in which students do not specifically reveal a patient’s identity but share details of a personal nature, motivated by a variety of intentions (e.g., a desire to reflect on a meaningful experience, reaching out for social support in the event of a patient’s death). Using ethical principles and professional policy recommendations, they discuss aspects of these postings that are potentially problematic. Consequences include the possibility of undermining public trust in the profession, inadvertently identifying patients, and violating expectations of privacy. The authors recommend that medical schools explicitly address these issues across the preclinical and clinical curricula and emphasize that patient-related postings on social media may carry inherent risks both to patients and to the profession.

D.M. Wells is a fourth-year medical student, University of Washington School of Medicine, Seattle, Washington.

K. Lehavot is research clinical psychologist and assistant professor, VA Puget Sound Health Care System, Seattle Division, and Department of Psychiatry and Behavioral Sciences, University of Washington School of Medicine, Seattle, Washington.

M.L. Isaac is assistant professor, Department of Medicine, University of Washington School of Medicine, Seattle, Washington.

Editor’s Note: A Commentary by D. Ofri appears on pages 1005–1006.

Funding/Support: This material is the result of work supported by resources from the Department of Veterans Affairs (VA) Puget Sound Health Care System (K.L.) and the University of Washington School of Medicine (D.W., K.L., M.I.). K.L. is supported by a VA Career Development Award from Clinical Science Research and Development (CX000867).

Other disclosures: None reported.

Ethical approval: Reported as not applicable.

Disclaimer: The views expressed in this article are those of the authors and do not represent the views of the Department of Veterans Affairs, the United States government, or the University of Washington School of Medicine.

Correspondence should be addressed to Deva M. Wells, 1959 N.E. Pacific St., Seattle, WA 98195; telephone: (206) 650-9998; e-mail: devaw@uw.edu.

The use of Web 2.0 applications—a collective term referring to online social networking sites such as Facebook, Twitter, and Instagram—has soared in recent years.1 Social media can positively impact health services and health education2,3 but can also raise concern by enabling the wide and rapid dissemination of content that could be harmful to patients, providers, and the public perception of the medical profession.4 As the path to secure privacy settings on these platforms becomes more convoluted,5 the potential for unintentional misconduct is increasingly apparent, and a variety of professionals are now facing repercussions for their online behavior.6–8

Medical students, as future health care professionals, share an important responsibility in preserving public trust in the medical profession, especially as they interface with patients during clinical training. Medical students are also high users of social media sites such as Facebook,9,10 yet only a minority use strict privacy settings.11 Inappropriate postings on Facebook are particularly problematic, given that the viewing audience may be over three times greater than most users estimate.12 Incidents of unprofessional conduct online appear to be fairly common, though few medical schools have established clear policies regarding online behavior.10,13 Those that have may focus primarily on the impact of violations of the Health Insurance Portability and Accountability Act (HIPAA) and improper self-disclosures (e.g., substance use) without addressing a different kind of practice: revealing information related to patient care on social media in a manner that is technically HIPAA compliant, yet is ethically questionable. Although examples of explicit privacy violations on social media and blogs have been previously characterized,10,14 this issue of patient storytelling represents a “gray area” of online transgressions to which medical students may be especially prone and warrants further exploration.

We examine three case scenarios that we have commonly encountered, referring to principles within the American Medical Association (AMA) Code of Ethics15 and professional policy recommendations to identify aspects of online sharing that may raise professionalism or ethics concerns. We also suggest strategies for fostering discussion and providing guidelines around this issue during preclinical and clinical training.

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Found on Facebook: Three Case Studies

The following are modified versions of Facebook postings shared by medical students during clinical training.

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Case 1

A student on her surgery rotation at a well-known hospital encounters a patient with a severe injury that occurred while the patient was intoxicated. Part of the student’s posting on Facebook includes “Note to everybody: don’t get drunk and fall asleep on train tracks.…”

In this case, there is no identifying information presented about the patient, and although the circumstances surrounding the patient’s traumatic experience are somewhat uncommon, the hospital serves such a large patient population that it would be essentially impossible to determine the patient’s identity. Nonetheless, several aspects of this posting are unsettling and call into question a relatively recent addition to the AMA Code of Ethics.15 Under the section “Professionalism in the Use of Social Media,” the Code of Ethics now states,

Physicians must recognize that actions online and content posted may negatively affect their reputations among patients and colleagues, may have consequences for their medical careers (particularly for physicians-in-training and medical students), and can undermine public trust in the medical profession (emphasis added).

Although the student’s description of events preserves the patient’s anonymity, there is a conspicuously judgmental and disdainful tone to the posting that could influence public perception of the medical profession and medical education. Most people would expect compassion and discretion in the aftermath of such a gruesome incident, and the lack thereof could lead to decreased trust of health professionals. Disparaging commentary could also incite feelings of shame or embarrassment among viewers who have also suffered injury related to substance use or other behaviors and could potentially discourage patients from seeking care in the future. Most likely, the macabre quality of the patient’s story inspired the posting in the first place; even with a genuine desire to “warn,” the posting does not simply inform readers dispassionately about an interesting trauma case but, instead, carries an element of sensationalism and both objectifies and dehumanizes the patient in this specific scenario.

Medical students, by virtue of their clinical training, will participate in the intimate task of caring for patients, some of whom will present with fascinating pathology and complicated lives. Brushes with memorable patients may deepen students’ understanding of disease processes, and expressions of enthusiasm for experiential learning are not inherently inappropriate. This very learning, however, depends on patients’ willingness to permit students’ presence in clinical encounters; as outsiders of the medical system, students make an implicit pact with patients to respect patients’ privacy in return for permission to enhance their own education. Given their unique role in the medical system, students may create an especially damaging breach in trust and in patients’ expectations of privacy when they circulate accounts such as the one presented in this case.

Finally, the psychosocial aspects of this case and how they are presented must be addressed. A lack of empathy for individuals who struggle with addiction and substance use is not uncommon, even among health care professionals.16 The posting conveys insensitivity toward the psychosocial factors that mediate alcohol consumption and its sometimes devastating consequences, such as self-injury.17 It also sparks debate about the supposed decline in medical students’ empathy during the clinical years.18 Whether students’ prejudicial and negative attitudes might be effectively addressed in a digital domain like Facebook is unknown. Perhaps the student’s posting might create the opportunity for others in her social network to challenge her views (e.g., “That seemed a little harsh”) in a way that may not occur in a more formal classroom or medical setting. Nonetheless, whether or not constructive dialogue ensues, a danger of such postings is that they may engender distrust toward health professionals and trainees.

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Case 2

A student who enjoys creative writing posts a link to his public blog on which he describes a patient: “Mr. Z is a charming 94-year-old man who’s lived a good life and made a living working as a mechanical engineer back in the 1940s. He has a family, grandkids, and now great-grandkids. He’s more than just a guy with COPD [chronic obstructive pulmonary disease], aspiration pneumonia, and renal failure. He’s my patient. His two grown children are the ones who have now opted for palliative care given his worsening condition.” The student goes on to specify the small, community-based hospital at which he is caring for the patient.

First, it should be noted that the student has committed a HIPAA violation. Age over 89 falls under protected health information (PHI), and this disclosure is akin to revealing the patient’s name or birthdate if it is “listed with health condition [or] health care provision or payment data, such as an indication that the individual was treated at a certain clinic.”19 Even if the student had not mentioned the patient’s age, there are other important issues. The remainder of the information, although not technically PHI, may nonetheless be sufficient to identify the patient, especially because the patient was cared for at a community-based facility in a less populous area. It is the context of the story and social media’s propensity for expansive dissemination that make this posting potentially problematic. A patient treated in a large, urban center and discussed verbally in the confines of a small-group setting is much less likely to be identified.

In this case, the student could have minimized personal details, altered the clinical picture with acknowledgment, and withheld the hospital site to bolster the patient’s confidentiality. Given that many medical schools now provide educational experiences in smaller community-based and rural settings,20,21 students should be encouraged to consider the role of geographic, demographic, and other nonprotected variables in determining the capacity of their posts to identify patients. In other words, protection of patient confidentiality, guided by professional ethics, may extend even further than the rigorous limitations imposed by HIPAA. Furthermore, this case serves as a reminder that HIPAA training must emphasize the full spectrum of PHI, including its lesser-known demographic components.

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Case 3

A student has her first experience of a patient’s death, which was unexpected and has deeply affected her. Reflecting on this experience, the student posts the following on Facebook: “I had my first patient death, a man who served his country in combat. I opened up his chart and burst out crying. I will never forget the last conversation I had with him, about his wife of over 50 years. They met when they were just kids and had such a great life together, raising three daughters. They were such a great couple and that’s what makes me so sad. The wife never saw this coming, she looked so shaken and scared. I don’t know how to get past this.”

In contrast to the first case, this student’s posting is remarkable for its humanistic character and holistic account. It also illustrates the complex emotions that clinical exposure can generate, which can be difficult for students to interpret in the absence of immediately available mentors and peers. Death and dying, in particular, may be powerful and disconcerting, and all too often, students miss out on opportunities for debriefing.22 This student’s admission of her struggle and invitation for support are admirable, yet the scrupulousness of her posting is worth examining further.

It is easy to empathize with this student and see the value in the posting, because even brief writing exercises have been shown to assist students with processing their emotions surrounding a patient’s death.23 Expressing this moving experience in person with a small group of friends, family, or colleagues probably would not have posed an ethical dilemma. But the student reveals strikingly personal details that the spouse and patient may have felt comfortable sharing firsthand with an attentive trainee, but may not have wanted aired to an unknown and potentially large audience. Even without the threat of identifying the patient, the reproduction of intimate aspects of a patient’s life—shared in confidence—on a student’s personal Facebook account is a practice that can undermine patients’ and family members’ expectations of privacy. The spouse’s preferences in this case are unknown, and being overly cautious about what patients or their loved ones would want publicized about their lives on social media is in keeping with the principle of holding patients and their families above the self-interest of the physician or trainee.24 Furthermore, witnessing such an intimate disclosure could have negative consequences for members of the viewing audience on Facebook, leading them to question what they choose to share with future health care providers or trainees. It is worth noting that there could also be positive consequences of this posting; in contrast to the first case, a posting with a thoughtful and patient-centered tone might positively influence the perception of the medical profession for members of the public.

The American College of Physicians recently published a position paper on medical professionalism in the era of Web 2.0 that identifies the potential for public consumption as the ethical crux of online behavior and states that “Consideration should be given to how patients and the public would perceive the material.”25 Thus, it might be helpful to ask students to consider the following question: Would your patients or their family want a medical student or health care provider posting about them on Facebook? The uncertainty of patients’ preferences should be stressed, and students should err on the side of caution.

Fortunately, there are alternative avenues for narrative reflection that students can pursue without the ethical implications of using social media, and reflection is a well-established learning tool that can assist students with processing emotionally difficult patient encounters.26,27 For example, medical journals and essay contests present opportunities for well-written reflection. They are generally closed-access and require the modification of patient identifiers, written permission from the patient, or strategic fictionalization. In addition, reflective writing classes and private online discussion fora offered by schools can be shrewd and secure uses of technology that allow students to partake in narrative medicine and professional development with a focused audience.28,29 Lastly, we should encourage students to reach out to their peers, residents, attendings, and nonevaluating faculty and staff for more immediate and interpersonal support in lieu of turning to social media, which can have unforeseen consequences.

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The Digital Dilemma of Online Sharing

These scenarios raise difficult questions about the broadcasting of clinical experiences on social media. Students should certainly be mindful of professionalism and respect for patient confidentiality in all settings. Divulging aspects and opinions of patient care on social media poses greater risks than doing so in person because of social media’s “invisible audience.”12 These cases did not include flagrantly inappropriate material such as defamatory remarks; rather, they were intended to function as interesting and cautionary tales, requests for emotional support, and shared reflections on the trials that many confront during the clinical training years. Medical students have been shown to report significant personal versus professional identity conflict online and may not agree on what constitutes unprofessional activity,30 though many medical educators believe that posting patient narratives on social media—even when using a professional tone and complying with HIPAA—is always inappropriate.31,32 The likely disconnect between what experienced faculty and medical students regard as proper etiquette underscores the need for schools to address this topic with a sensitive strategy that stirs discussion, provides guidance, and proposes other outlets for expression.

A useful concept for understanding why medical students may readily post patient narratives in contrast to educators’ more cautious approach was proposed over a decade ago: students are “digital natives” and older educators “digital immigrants.”33 As digital natives, students have grown up in an era of widespread use of technology, which now plays a major role in education, interpersonal communication, and the formation of social relationships. For many digital natives, posting personal thoughts and experiences on social media is natural and unexamined, and students may view brief patient storytelling as benign when compared with the more egregious offenses that typically dominate discussions of online professionalism.34 This distinction between digital natives and digital immigrants may be an important teaching point, as digital natives may not immediately relate to the discomfort that many digital immigrants (who may include patients, educators, and colleagues) may have with patient storytelling on social media.

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Recommendations

Engaging with students on this issue during the preclinical years can set the stage for more judicious use of social media in the future. At our institution, for example, in the first quarter of medical school in the Introduction to Clinical Medicine course, we conduct a classwide, interactive lecture and discussion titled “Personal and Professional Identities: Becoming a Professional in the Era of Web 2.0.” We present a variety of real-life scenarios in which personal and professional identities and commitments come into conflict and, using interactive audience-response technology, invite the class to discuss the “gray” areas of these cases with their classmates. Many of the scenarios presented in class involve privacy and social networking (e.g., posting a patient vignette on social media, responding to a “friend request” from a patient), whereas others involve a more traditional context (e.g., responding to a medical emergency on an airplane while on a personal vacation, providing medical advice to friends and relatives). We believe it is important to increase awareness around these issues early in medical education so that students contemplate their burgeoning professional identity as well as the role of social media in their lives and their responsibility to their future patients and profession. Nonetheless, students may be less reflective and cautious when they advance to the clinical years with the engrossing immersion into patient care and the impact of the “hidden curriculum” on professional behavior.

We therefore recommend the implementation of educational programs that continue into the clinical years to encourage students to deliberate on these issues in the time when they most frequently interact with patients. These programs, such as facilitated discussions, online modules, or lectures in clinical or professionalism-based courses, should address these issues using plausible and common scenarios. In addition, attending and resident physicians can help shape students’ online conduct by addressing the use of social media in conversations about expected behavior during a clerkship and students’ roles on the care team.

A recent article endorsed a “stop and think” approach to patient narratives on social media, offering that “writing a deidentified patient narrative using a respectful tone on a blog or other social media site, similar to narratives published in books and medical journals, is not itself wrong.”35 The cases presented here, however, present opportunities to reflect further on the potential consequences of this practice. Unlike books and medical journals, social media include an unexpectedly large audience composed mostly of laypeople.12 Although the stand-alone details about a patient may not be instantly revealing in these online narratives, it is the platform of digital dissemination that threatens to render the details identifiable. Furthermore, sharing patient stories of a personal nature, even if positive and with the best of intentions, may be perceived by viewers as encroaching on patients’ personal boundaries, thus carrying some inherent risk to the public and to the profession. More robust education surrounding the scope of online sharing might compel students to post more carefully, as knowledge of true audience size on Facebook has been shown to elicit more conservative posting patterns.36

We believe that medical schools should discourage students from patient storytelling on social media, irrespective of intent, tone, and strength of their privacy settings. If students choose to continue this behavior, we have presented several points to consider for more prudent posting and harm reduction. Opportunities for students to reflect on patient care in safe, secure, and nonjudgmental venues should be offered. As social media inevitably become more integrated with daily life, and as patients continue to place their trust in the medical profession as they have since the time of Hippocrates, students face the challenging task of reconciling their use of these technologies with the core ethical values of practicing medicine. Medical schools and physician educators should play an active and key role in helping students translate professionalism to the world of Web 2.0.

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