Pausing before posting

The ethics of #MedTwitter and medical social media

Dr. M cared for a patient with a large cerebral aneurysm rupture. She tweets the following along with her patient’s cerebral angiogram:

“Cerebral aneurysms are fairly common, but only few rupture. This is THE biggest vertebro-basilar junction aneurysm rupture I’ve ever seen but nothing a y-stent and coils couldn’t fix #Irad #NeuroRad.”

The post receives over 1,000 likes and is reshared repeatedly.

Dr. M is one hypothetical IR in a large network of physicians who are on social media platforms like Twitter. The 2014 Radiologists and Social Media (RANSOM) survey indicated that 41% of U.S.-based participants use social media for professional purposes1, and this have been increasing.2 Social media can be an excellent forum for clinicians to exchange ideas, network and teach trainees. It can also be a powerful tool for advocacy and public health awareness campaigns.3 But, despite these opportunities, sharing medical information on social media also raises important considerations regarding patient privacy and dignity as well as potential adverse effects on medical decision-making.

 It is important to note that both the spirit of HIPAA and medical ethics require us to reach beyond the explicit.

Trust is central to the patient–clinician relationship, and a key part of this trust is protection of patients’ privacy and dignity.4 This has become ever more important in an era where medical imaging and vignettes have become common on public social media accounts. In the United States, protection of patient information is governed by the Health Insurance Portability and Accountability Act (HIPAA). This act requires removal of identifiers from an individual's health information that could reasonably lead to the information being linked back to the patient before it can be used for secondary purposes. In a study of 1,206 tweets from healthcare professionals, only 2% of posts explicitly violated HIPAA regulations5, but it is important to note that both the spirit of HIPAA and medical ethics require us to reach beyond the explicit.6 For example, there’s a tendency to share rare and sensational cases shortly after they occur, raising the risk of identification.7 Unlike a case report in a journal or conference, these are open fora where patients may follow their clinicians, especially if their condition is rare. Dr. M may have removed explicit identifiers from the angiogram but she practices in an area with few neurointerventionalists who rarely treat ruptured aneurysms and posted this the day after treatment. If a family member, acquaintance or even the patient themself saw the post, they may recognize the patient’s story and feel exposed if consent was not provided. This in turn can have secondary adverse effects by undermining patients’ and families’ trust in future episode of care8 or affecting their employment if their condition is widely shared.

An additional risk is undermining patient dignity in how we share cases. It is common for co-workers to discuss their mutual work behind closed doors. In healthcare, this work often involves human pain and suffering.9 We talk in terms of cases and pathology where someone’s traumatic, life-threatening experience can become “the biggest aneurysm I ever saw” or “grossest foot I ever reperfused.” In a sense, social media has provided a public window into our offices and conference rooms where discourse meant for other healthcare workers can be viewed in an unforgiving light. Even if the original patient never sees the post, these phrasings can be dehumanizing and further erode public trust in clinicians and healthcare. Dr. M’s hypothetical post is rather benign, but others are not.

In addition to patient privacy and dignity, the open exchange of medical information online has distinct benefits and risks relative to fora like peer-reviewed journals or conferences. On one hand, social media has enabled a faster means of sharing experience and insights or crowdsourcing solutions for challenging clinical situations. On the other, this speed comes at the price of fewer safeguards against misinformation in a space where information can gain prominence based on its popularity rather than accuracy.10 There is also less room for context and explanation that may be necessary to truly replicate someone’s results.11 After all, there’s no preceding peer-review process for what we tweet, and it doesn’t take much time to write 280 characters or less. Another potential adverse effect is optimism bias.12 Both in IR culture and on social media, there’s a tendency to highlight the gallant successes and heroic saves rather than failures. We take pride in developing innovative solutions for problems and pushing boundaries, but these successes can come at the price of other less successful attempts and complications that are not often part of the narratives we share. This can create a false sense of ease or success, perhaps prompting others to attempt something they may not have otherwise.

Considering these challenges, it may be helpful to collectively develop a “Best Practices” guide for how best to reap the many educational and promotional benefits for our specialty while not undermining our professional values. For example, one of the authors of this article considers the following points before each professional post: “Could someone close to the patient readily identify this case?” and “If I saw this post about a loved one, how would I feel?” It’s also helpful to consider the potential effects on clinical decision-making and, where possible, provide some context and balance. Consider two examples of how to promote such an article:

This patient had suffered intractable pain for 10 YEARS on daily oxy due to a forgotten OptEase. One <1hr #IRad procedure and now he’s pain free off narcotics! #FilterOUT #MIIPS #FilterFridays (shared with patient’s permission)

Check out this excellent review by Kuo, Desai, and Ryu on advanced filter removal for techniques, risks, and benefits [article link]

An additional potentially helpful approach for those who regularly post cases online would be to routinely discuss the possibility of using patients’ deidentified stories and/or imaging with them as part of the consent process. This would give them the option to opt out and enable clinicians to routinely note that cases were used with permission without having to discuss this retrospectively. Ultimately, it is up to individual clinicians to decide how to present themselves on social media, but we owe it to our patients, selves and colleagues to pause and check before we post.

References

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