By DALE SINGER
How would you feel if you found out that your doctor was researching you online to learn more about you? Happy she was so thorough? Annoyed at her nosiness? Maybe a little of both?
With more people using social media and more details of people's lives available online, most health care professionals are a mouse click away from learning things their patients may not have shared yet — or may not want to share — with their health care team. While searching for information about patients online may provide relevant information in some cases, it can also be an intrusive, if surreptitious, invasion of privacy. And, though the line between appropriate searching and inappropriate searching is far from clear, the practice is common enough that there is a growing body of journal articles on the topic of "patient-targeted Googling."
Leslie Kuhnel, division ethicist at CHI Health in Omaha, Neb., is among those working to help clarify this murky ethical area. She published an article in the Summer 2018 edition of The Journal of Clinical Ethics examining the topic and describing TTAPP, a critical thinking tool developed by CHI Health's Behavioral Health Ethics Committee. TTaPP, which is short for Together Take a Pause and Ponder, is intended to prompt health care professionals to weigh their intentions and motivations before conducting online searches for information about their patients.
Do patients realize clinicians are doing such online searches?
For a lot of patients, it probably wouldn't even occur to them that their health care professionals might be looking for information online about them. Some patients, though — younger patients in particular — may not be surprised at all. In fact, for a few, there may be an expectation that since information about them is already there online, people other than their friends and family may be looking at it.
How did TTaPP come about?
One of our treatment teams was curious about some events happening within the family of a patient. They decided to search online to find out more and stumbled upon some information that caused them to become conflicted about what to share and what not to share with their patient. This knowledge was about events that the patient's family had not yet decided to share with the patient or the team, and it had a significant impact on the trusting relationship between the team and the family. As a result of that experience, the treatment team turned to our Behavioral Health Ethics Committee for guidance.
After a lot of thought and deliberation, the committee decided to create a tool to help professionals think through whether or not to search online for patient information. Our goal was to explore the ethical dimensions of online searching, and help people recognize the potential benefits and possible risks of harm that might result in the therapeutic relationship if such searches were done without thoughtful consideration ahead of time. For example, the information might give a false impression of the person or may be something the person is not yet ready to share.
Knowing there may be a problem with the information found online, what should we be thinking about in order to mitigate any risks of harm to the therapeutic relationship between provider and patient?
We set a standard that before deciding whether or not such a search would be ethically justified, a health care professional should check in with a colleague and work through a set of questions — some crafted by our team, and others drawn from the emerging literature about patient-targeted Googling. Those questions include: Is my looking for this patient's information helpful or potentially harmful to the therapeutic relationship? Is there information online that I need to know in order to move treatment forward for this patient? Can I get this information simply by asking the patient directly?
If I do decide to search online, how will I assess the accuracy of information I find? And what do I do with that information? Do I let the patient know what I found? Do I share the information with other care team members? And if I do share, how will that positively or negatively impact their relationship with the patient?
Where do you draw the line about when to search online?
When our ethics committee first started the discussion, we thought there was a pretty obvious answer: Never search online. Then we recognized there might be potential benefits of this source of information. For example, we now may be able to search online for a relative or friend of an otherwise-unrepresented patient who cannot speak on their own behalf.
But we have to be careful about how, when and where we are using such searches. Are we looking at public records? Or are we searching for friends of friends, or reading various social media feeds? Are we responding to specific concerns raised during our encounters with patients, or are we fishing for information or acting out of mere curiosity? The ethics committee wanted to empower clinicians with a critical thinking tool so they would be in the position of making this type of decision in a much more deliberate way.
We also thought a lot about the lines between the public and private lives of our patients. Online searching by health care professionals is one subset of much larger online privacy and confidentiality issues being explored these days. In this digital context, information available online is not solely dependent on my own decisions about what to post and what not to post. It is also driven by the decisions my friends and family make about what to post online, and by decisions made about me and for me regarding where my name or information might appear.
Traditionally as patients we have been able to decide if and when we were ready to share information with providers. A patient's story would emerge in an organic way within the context of the therapeutic relationship. Now, with the ability of others to go online to find information about a patient so easily, the control of when and if to share information shifts from patient to care team. I believe this significantly increases the potential vulnerability of our patients.
Are there times when online searches could be helpful within the therapeutic relationship?
There sure are. For example, a provider working with a patient who is struggling with boundary issues or online relationships, might sit down with a patient and say, "Let's take a look together and see what's online." In this case, online searching can be a really powerful tool within the context of the therapeutic relationship.
What areas need further research?
I think right now we're making lot of assumptions that patients don't ever want their online information to be discovered by their health care providers, but that may not be true for everyone. We may get to a time when patients are thinking, why wouldn't you look at this, and maybe even saying that the information is out there, so you have a responsibility to look at it. I don't think we're there yet, and the expectations for privacy and confidentiality may vary from generation to generation, but there might come a time when such online searches are just part of the health care process.
What we tried to do with the TTaPP approach is to get health care professionals thinking about what kinds of ethical questions we should be asking related to online information searches. For Catholic health care in particular, it is critically important for us to consider how such activities put respect for the dignity of every person at the forefront. We have to recognize that sometimes the easiest way to find out things may not be the most compassionate way to find them out. That is, if we even need to find them out at all.
View a narrated educational video on TTaPP.
Tool helps providers decide whether to Google patients
- How is my decision to search for online information guided by our mission, core values and standards of conduct?
- Why do I want to search online for information about this person?
- Could my online search either advance or compromise treatment?
- Should I ask permission from this person before searching online for information?
- Should I share online search results with this person?
- If I do search online, should I document any information I find in this person's medical record?
- How do I monitor my motivations along with the risks and benefits of searching online for information?
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