By Margot Hedlin, MD
Peer Reviewed
It’s another 27 hour call in the ICU, and at 10 pm the unit has slowed down. You open a browser to read up on some of the conditions you saw today – a refresher on the A-a gradient, the side effects of propofol, the work-up of hyponatremia – and then you remember hearing that the patient in bed 3 was on TV once and you open up another tab.
With the world virtually at your fingertips, knowledge and resources formerly far out of reach are now incredibly accessible. We look to the internet for everything from medical literature to the president’s latest tweets – is it ethical to look up your patients as well? The question seems simple, but the debate on “patient-targeted googling” has brought impassioned arguments on everything from practicality to privacy. While there are no specific laws or formal professional society guidelines as yet, here are some of the questions that are shaping the debate.
What is “patient-targeted googling”?
Patient-targeted googling (PTG) is the act of searching for information on a patient on social media platforms or publicly available internet browsers. The term bears no allegiance to any particular search engine, and is neither a criticism nor endorsement of the company Google.
How do the principles of professionalism relate to PTG?
Fundamentally, the debate about PTG hinges on our understanding of our professional expectations: what are our duties to our patients? Does PTG advance those duties?
It is worth framing this discussion by referring back to the 2002 charter “Medical Professionalism in the New Millennium,” which provides a widely accepted definition of professionalism. Several principles in particular stand as relevant to the conversation. First, the primacy of patient welfare, described as “a dedication to serving the interest of the patient” which fosters a sense of “trust that is central to the physician-patient relationship”. Next, the principles of patient autonomy and privacy emphasize the importance of respecting patient’s decisions with regard to their care and the ways their information is obtained and managed.
Is information on the internet public? And if so, is that enough justification for a search?
Previously, the only information available to doctors came from the patient’s history, from collateral information obtained from friends and relatives, and from the patient’s medical record. As such, patients had significant control over the information they shared with their physicians.
While the information on the internet is publicly available, few patients are posting with their doctor in mind – and a significant amount of information can end up on the Internet without a person’s knowledge. As Volpe et al argue, “ethically, what matters is intent: if the patient did not intend to make personal information available to the physician online, reading or viewing it is a breach of privacy.” Kirschner also argues that PTG could violate patient autonomy, noting that patients have the right to withhold information, even that which we see as being important for their care: “seeking potentially sensitive information without the patient’s awareness undermines respect for the patient as a moral agent.” Clinton et al describe a number of scenarios where the internet can reveal information that would be considered private under other circumstances; they describe, for example, a hypothetical situation in which a doctor looked at a patient’s house on an online map to estimate his income or social status. They pointed out that before the internet became a repository of nearly all types of information, the physician would have had to drive to the patient’s house to obtain that information – what most would view as a clear crossing of boundaries. In a policy statement on online medical professionalism, the ACP and Federation of State Medical Boards note that “digitally tracking the personal behaviors of patients, such as determining whether they have indeed quit smoking or are maintaining a healthy diet, may threaten the trust needed for a strong patient-physician relationship.” In short, patients may consider information on the internet private because they did not intend to share it with their physicians, and seeking that information out could threaten the trust underlying the therapeutic relationship.
As such, multiple authors caution against PTG unless there is a compelling reason to do so – one that supersedes the patient’s rights to privacy and autonomy. The American Psychiatric Association published an opinion stating that PTG “should only be done in the interests of promoting patient care and wellbeing and never to satisfy the curiosity or other needs of the psychiatrist.” Clinton et al specifically caution against “curiosity, voyeurism, and habit” as motivators for the search, as they do not promote patient welfare.
Of note, the examples discussed above describe circumstances under which physicians are engaging in PTG without the patient’s knowledge. Many patients have photography, writing, or art accessible online, and some invite their physicians to look them up on the internet. This type of PTG is done with patient’s consent and has the potential to strengthen the therapeutic relationship, and as such is ethically justifiable.
When would it be ethically justifiable to internet search a patient?
A patient has been on the ventilator for two weeks, with no known family members or decision-makers, and no documentation of goals of care; a patient is asking for an unconventional or invasive treatment, and his behavior and history are raising red flags for the team; a patient’s biopsy confirms breast cancer – and she hasn’t responded to any phone messages or letters. There are certain circumstances, George et al argue, where it would be irresponsible not to use all the resources at hand; as they put it, “any argument encouraging current professionals to adopt an ‘abstinence-only’ approach to the internet puts them at risk of breaching the solemn oath to ‘Do no harm’”. Baker et al suggest that PTG might be justifiable in order to obtain otherwise unavailable information that would change the treatment plan and promote a patient’s immediate safety, such as concerns about imminent suicide or serious abuse. In short, a beneficence argument can be made for PTG if the information is likely to be absolutely necessary for the patient’s safety and cannot practically be obtained any other way.
So clearly, these two circumstances – curiosity versus beneficence – stand on opposite extremes of the spectrum. However, as there are many clinical scenarios where the morality isn’t entirely straightforward, physicians should be aware of the significance and potential pitfalls of PTG prior to searching so they can make consistent and justifiable decisions about whether or not to perform the search. The following comparisons highlight some of the nuances that distinguish PTG from other forms of obtaining information, and may help inform providers in their decisions regarding PTG.
There are plenty of situations where we access information about patients – how is internet searching different?
Apart from the information we get in the EMR, there are a number of situations where we obtain sensitive information on our patients. We get opiate prescribing information from I-STOP; we ask families or friends for information if the patient is unconscious or incapacitated. How are these circumstances different?
Regarding I-STOP, there are several notable differences. First, as a carefully curated database, the information we obtain is guaranteed to be accurate. By contrast, in the age of photoshop and “fake news”, we would have to carefully vet information from the internet before making decisions that could impact a patient’s care. Second, I-STOP provides a specific answer to a specific question; as Kirschner et al point out, PTG is a “fishing expedition” – the search could reveal unintended and unwanted information. For example, finding that a patient has a criminal history or a habit of making incendiary posts could make it challenging to provide good care for the patient by consciously or unconsciously impacting the physician’s judgment. Third, I-STOP is transparent; the laws governing its use were publically debated and made widely known. Finally, I-STOP is used in accordance with the principle of consistency: we are legally required to look up all patients in I-STOP prior to prescribing opiates. However, there is no clear indication for when we would perform an internet search on one patient versus another – and as such providers might preferentially perform searches on individuals they consider untrustworthy, a problematic situation as providers would likely be guided by implicit bias and could perpetuate discrimination.
Regarding collateral information from a patient’s friends and family, the information is specific and is obtained expressly in the interest of patient welfare: Providers ask targeted questions that will further the patient’s course of treatment; it would be widely recognized as outside the bounds of professionalism to seek collateral out of curiosity, voyeurism, or habit. Second, in accordance with the principle of autonomy, collateral information is usually obtained through friends and family members who the patient has given consent for providers to speak with, either expressly or by providing their contact information. When providers bypass this process of consent, it is under extenuating circumstances (emergencies or patient incapacity) and in the interest of patient welfare.
Questions to ask yourself before you hit “search”
Considering the potential implications PTG could have, Clinton et al recommend a number of questions for providers to ask themselves before looking a patient up on the internet.
- “Why do I want to conduct the search?”
If it is out of curiosity/voyeurism, or habit, then the search is ethically unjustifiable and should not proceed.
- “Would my search advance or compromise treatment?”
Is the intent of my search to clearly advance the patient’s best interest? What should I do if I come across information that might negatively impact my ability to care for the patient? Is there another way for me to get this information?
- “Should I obtain consent from the patient prior to searching?”
Considering that patients may regard information on the internet as private, should the decision of whether to perform the search fall under the realm of shared decision-making? Will it be easier to discuss information that I find if the patient knows in advance that I might be searching?
- “Should I share the results of the search with the patient?”
As the information obtained may change the patient’s course of treatment, it may be necessary to discuss the results.
- “Should I document the findings of the search in the chart?”
We are obligated to enter complete, accurate, and relevant information into a patient’s chart. However, information in the EMR could affect insurance or future employment – how should information obtained from PTG be documented? How can we verify the information we find through PTG?
- “How do I monitor my motivations and the ongoing risk-benefit profile of searching?”
How can I ensure that my practices remain in accord with emerging professional expectations, and the patient’s best interest?
With beneficence standing on one side, and respect for a patient’s privacy, autonomy, and the imperative to maintain trust necessary for a therapeutic relationship on the other, questions about appropriate practices for PTG require careful consideration. While the framework provided by Clinton et al helps us be deliberate in our actions, perhaps Kirschner et al offer the best advice: “Ask the patient.”
Dr. Margot Hedlin, resident physician, NYU Langone Health
Peer reviewed by Kenneth Berkowitz, MD, Interim Executive Director, National Center for Ethics in Health Care, Department of Veterans Affairs, Associate Professor, Department of Medicine, Department of Population Health NYU School of Medicine
Image courtesy of Wikimedia Commons
References
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