Opinion

The patient as content

Mr. Smith is a 35-year-old man diagnosed with COVID-19. The internist managing his care takes a photo of Mr. Smith’s chest X-ray and posts the image to his social media account, accompanied with #AnotherCovidPatient and an “eyeroll” emoji. Mr. Smith deteriorates clinically, requires intubation and is admitted to the intensive care unit. Several days later, Mr. Smith stabilizes and is extubated. A few hours after he is extubated, the intensivist now managing his care asks if she can share his story on her social media account. Mr. Smith agrees.

The COVID-19 pandemic has moved physicians to the forefront of the cultural mainstream. As the public craves information on the pandemic, many physicians have seen their social media following grow substantially. Most have used their newfound audience to disseminate information that has been immensely useful to the public and their medical colleagues alike. But to maintain this online status, some physicians have turned to mining their professional lives for content, which increasingly includes sharing patients’ medical information. And while the above vignette is fictional, it is based on real social media posts that are occurring at an alarming frequency. I believe that this trend threatens to erode patient trust and undermine the doctor-patient relationship.

Like other social media users, many physicians are posting updates in real time. And while this is entirely acceptable when the content is, for example, the results of a published manuscript, a political opinion, reflections on the latest episode of Ted Lasso or critiques of health policy, it should not be acceptable when the content is a patient’s medical status.

Like the internist in the vignette above, it may seem like posting medical information without identifiers, such as the patient’s name, fulfills a duty of confidentiality. But when physicians share patient information on their social media profile (especially if it’s open to the public), it’s not hard for many to identify the relevant patient and it’s undeniably easy for the patient to identify themselves. This should be obvious but a cursory review of #MedTwitter, for example, suggests otherwise.

The Canadian Medical Association states that while informed consent is required as a general rule, physicians may infer that they have the patient’s implied consent to collect, use, disclose and access personal health information for the purpose of providing or assisting in providing care (i.e., share only the necessary information with those involved within the patient’s circle of care). However, some physicians are sharing patients’ medical history on social media where, despite the target audience often being health-care personnel, information is disclosed to the entire public, the majority of whom are clearly not in the patient’s circle of care.

More worrisome, once this information is shared online, physicians no longer have control over the content, which can be disseminated to large and unintended audiences who can comment in ways that can be offensive, inaccurate and conflict with the management plan outlined by the patient’s physician. The patient is left to sift through these comments without context, potentially causing great distress and harm. And if avoiding patient distress and harm are valued principles, physicians should exercise great restraint and thoughtfulness when sharing anything on social media that relates to patient care.

This leads to the issue of informed consent. In the vignette above, the intensivist shared Mr. Smith’s medical history with permission – but should a simple yes or no question suffice as permission? Getting consent, for a start, should include a discussion about the risks and benefits of posting on social media, disclosure of the objective for posting on social media and, most importantly, how it will serve the patient’s health. Moreover, this conversation should be executed in a way that does not exploit the doctor-patient power differential. For example, the intensivist could have asked for consent when she was no longer the managing physician, lessening the pressure Mr. Smith may have felt to agree for fear of alienating his doctor. In many of these recent social media posts, it is readily apparent that there was a short turnaround between the doctor-patient interaction and the post, and therefore any consent would not have been obtained free of this pressure; not to mention the lack of basic courtesy to allow patients time to heal and get perspective on their own health before it’s shared at large.

More to the point in this age of social media, the overarching concern remains: Even if physicians do everything correctly when getting patient consent, does this mean they should post on social media? Physicians should be honest with themselves and ask: Does this post serve my interests more than my patient’s? Can the professional objective of my post be achieved through more confidential pathways?

When physicians post patient information, it’s often presented in the larger context of searching for medical opinions, promoting education or showcasing medicine as a noble career. While this is often a good-faith intention, in some cases it can also be mere pretext to the real goal of creating and sharing “content.”

This trend could erode patient trust.

There are numerous ways these objectives can be achieved that better preserve patients’ anonymity. For example, if the motivation is to get additional medical opinions, the physician could follow traditional paths and present the case at rounds or refer to a colleague for a second opinion. If the purpose is to promote medical education, the physician could teach health-care trainees or write a case report. Of course, some of these alternatives require more time and effort – a clear drawback, especially during a pandemic. But the ease of social media should not be used as permission by physicians to forgo their professional obligations.

If the objective is to educate the public, and certainly patient stories can be an effective and memorable way to communicate, the current trend of posts that seem aimed at promoting the physician over patient health or public health needs to change. Sharing patients’ medical information in the public domain is not new, hospital fundraising campaigns have long featured patient stories, for example. But what seems different now on social media is the patient’s story is told by the physician and from the physician’s perspective. Patients seem to have little – if any – input in the sharing of their own medical information. So, if Mr. Smith is fully informed and willing to accept the vulnerability that comes with discussing his medical history with the public, the intensivist should have a professional duty to offer Mr. Smith the opportunity to have input on the content that is being shared to ensure it aligns with his values, goals, and the basis of his consent.

Having passion for your career and intellectual curiosity about medicine is, of course, a great thing. But if this is going to be shared online, there needs to be consideration for how such posts may be received by patients. Imagine your loved one was just diagnosed with acute leukemia and you read their physician’s social media post: “Awesome night on call, diagnosed acute leukemia – the blasts were beautiful! I love my job!”

Enthusiastic descriptions of what medical conditions (usually esoteric and near fatal) were diagnosed that day seem to be popular on social media. And to be clear, there have absolutely been times in my career where my excitement for making a diagnosis bordered on delight. In those moments, I forgot about what the patient was experiencing, and that is truly regrettable. But the difference between having enthusiasm and sharing it on social media should be obvious. And yet more and more physicians are sharing aspects of patient care on social media with seemingly no awareness that patients are also on social media. I don’t think most physicians would sit across from their patient and say it was awesome to diagnose them with acute leukemia. So, although social media can create a sense of separation from patients, it certainly does not mean our words will not reach them.

The doctor-patient relationship is one of the most sacred relationships anyone will ever enter. We are supposed to be a trustworthy source of information and support. We are not supposed to use our patients’ lives to promote an online brand or to centre ourselves in their trauma. We are also human beings and practicing medicine can be very hard; and more than ever there is a need to connect with others. But social media can invite a cruel pile-on, which would be horrible for a patient to experience. If a physician really believes there is a net material benefit to the patient or public by sharing medical history on social media, the physician must uphold the highest professional standards and empower the patient as a fully informed partner in this process.

Anything less should not be tolerated, and certainly should not be “liked.”

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Author

Stephanie Lee

Contributor

Stephanie Lee is a hematologist and is currently completing a master’s degree in epidemiology.

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