25 May 2011

My guidelines for blogging about clinical medicine

There's been quite a kerfuffle over the "Unprofessional" post Dr V wrote. A lot of people have been very shrill in denouncing physicians who write about their experiences using social media -- blogs, twitter, facebook, etc -- with particular emphasis on those who do not use their real names.

So, while I won't tell someone how they should blog/tweet, or try to impose my vision of professional standards on a community that clearly is still coming to consensus with public conversations by healthcare workers, I will offer you my personal guidelines and values that I use in determining what I am willing to put into the public domain. These are just my opinions; your mileage may vary. 

As a general principle: patients give physicians and nurses access to intimate details of their lives and they have a reasonable and valid expectations that we will respect their privacy and dignity. When using social media, that does need to be maintained. How you do that requires careful attention and may be controversial regardless of your approach.

Don't blog or tweet anything that you wouldn't want you boss/hospital administration to read. Stress test yourself by informing your employer or CEO about your blog and invite them to read it. That will keep you honest!

HIPPA -- it's the law, and it's a minimum standard for how much de-identified information you can publicly share. I would argue that how far you need to go beyond HIPPA depends on what you are writing, and the tone. If it's a straight-up medical science, such as an educational case report, I would contend that fairly little beyond the minimum information needs to be removed. If the case is unique, intimate or newsworthy, you may need to go a bit further. 

Even though you may not have your name on your blog or twitter, do not think for a moment that you are anonymous. It would take creative hackers about ten minutes to figure out your real name and location (ask me how I know!). A lawyer would also be able to get that info easily. Don't put it out there unless you would be willing to stand by it with your real name there. That said, I think there are good reasons to maintain some degree of anonymity. Every patient I see in the ER gets my card, and I suspect that more than one has gone home and googled me. If one were to find this blog, he or she might be quite upset at the mere prospect that their privacy might be violated. Even the possibility of that I find unacceptable, so I keep my name off the blog. Yes, it's easy enough to find out who I am. But I think it's important to try to protect patients from even the fear that their privacy will be violated.

Which brings me to the next and maybe most important point: don't blog about real patients. This is tricky. When you have a blog (or live on twitter) and you see something noteworthy in the course of your professional life, the reflex is to share it, especially when the audience is a mostly professional one. It feels like you're chatting at the nursing station, but it's more like the hospital elevator or lobby -- a public place. So look carefully at the case, figure out what about it that is worth sharing, and distill it down to that. Then rebuild the case with completely bogus details. Your authenticity is what makes your stories interesting and valuable, so it's challenging to create a realistic fiction which conveys the central pont in a believable manner. I'm sorry to say this, but all of the stories I have ever told on this blog, at least since the very early days, have been made up out of whole cloth. Each story did illustrate a real point that arose out of a real case. But I generalize, fictionalize, and use archetypes to illustrate the concept. I've seen enough patients to be able to build a credible composite. Also, don't do it in real time. Write up a case and let it marinate for a while. The more unique the case, the more obfuscation and time are needed to ensure that your post is not traceable to the incident patient.

When you do write about an appropriately de-identified and fictionalized patient encounter, add some redeeming value. If the central point of your post is "people suck" or "Patients are stupid and I hate them," then just possibly you need to reconsider before you hit publish. As i said above, education is an excellent value-added element for a medical post. Some bloggers write beautiful stories about the human condition, uplifting and sad alike. But there are other stories to tell, about your life on the other side of the gurney, and those are good, too. Sometimes a patient makes you angry or afraid, and those are valid stories to tell. Avoid telling patient stories for their simple prurient interest. If the central point of your story is "can you believe this?" find a better point before you put it out there, or delete it.

Don't eschew humor. People are weird and wonderful and the things they do are hysterical. There's nothing wrong with acknowleding that fact. Many patients, in real life, will laugh at themselves. But don't laugh *at* patients; that is belittling and demeaning. Find the humor and celebrate it. Be positive and affirming. Be self-deprecating. Humor and respect are not incompatible, but it is oh-so-easy to cross the line to the "bad" humor.

This is something new, and it's going to take time for the world to adapt to it. In the old days (defined as prior to 2003) medical conversations were limited to private discussions in the doctors' lounge and the occasional book. Now they take place in the public sphere. I think that's a net positive. It's good for doctors and nurses to be able to easily express their emotions and their experiences. It's also good for patients to be able to see behind the veil of what really goes on in the health care arena. Is it perhaps disconcerting? Yes. Is it easy for frustrated or burnt-out docs to overstep the bounds of propriety? Sure. it is not, however, the medium which is the problem. It is what you say that counts, and how you say it. 

I should also add, as a point of order, that if you go back through the nearly two thousand posts published here over the last six years, you will probably find some which do not live up to these principles. I have certainly learned, matured and evolved as a blogger in this time. In the spirit of intellectual honesty, I don't generally retro-edit or delete posts which turned out poorly. So feel free to play gotcha; it's easy. And I'll plead guilty in advance. 

I hope these guidelines are useful to you, if only to understand where I am coming from. I'm a little disturbed by the prospect of a bunch of busybodies trying to regulate what physicians can share online, so my intent here is to show that an anonymous blogger can approach the task from a principled and positive perspective. Feel free to let me know in the comments how I can do better.

14 comments:

  1. most impressive. thank you.

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  2. ....so my intent here is to show that an anonymous blogger can approach the task from a principled and positive perspective.

    1. Dork, you're not an anonymous blogger. That's like saying you're an anonymous clown, but showing up to work in a clown suit everyday.

    2. If you ARE an anonymous blogger, you shouldn't tell your CEO about your blog because then you're not an anonymous blogger. Duhr.

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  3. This comment has been removed by the author.

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  4. An excellent and well said post that can hopefully serve as a guideline to others.

    "If the central point of your story is "can you believe this?" find a better point before you put it out there, or delete it."

    I especially support that statement. The rub is these are often the easiest posts to write as they take little thought, but also that these types of posts seem to draw the most number of followers, so they are rewarding to write in that regard. At some level, we all want to feel validated by having followers of what we write. I started off wanting to just write a journal like blog, just for my own reflections, but I now catch myself checking page hits and subscribers. So I understand wanting to write "gossip" type posts as they generate the most chatter. They sell. We just have to check ourselves from time to time and think about our motive for writing what we do. As you mention, none of us are perfect and we all fail from time to time. But if we can at least be cognizant of the issue, its a good start.

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  5. I've always enjoyed reading your blogs whether it be controversial, inappropriate or right on the point! Is it too naive of me to be looking for an author who will take on this issue from the patient's point of view? I'm still puzzled that several physicians are responding with guidelines and how-tos rather than taking on the underlying issue of patient respect. At the end of the day, what matters more? Where and how a person shares her thoughts or how her thoughts shape her character? It is disconcerting to me that an anonymous writer is advised on the appropriateness of her words rather than the integrity of her servitude.

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  6. "Avoid telling patient stories for their simple prurient interest. If the central point of your story is "can you believe this?" find a better point before you put it out there, or delete it."

    THANK YOU. The fact that you do not do this sets you apart from those who find sport in casting moral judgment on patients. I get that people have these feelings, especially when they're being asked to help with problems that were completely preventable. I don't get putting those feelings in writing for the purpose of showing your moral superiority.

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  7. Not like this was the point, but I've read a few posts of yours that you could remove to make you quite a bit harder to find.
    As it is, it took me a good hour to find out who you are (sorry, don't want to seem like a stalker).
    Love reading your blog, though. Thanks for keeping it classy.

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  8. A very "a propos" post. Anonymity is relative, and you said it well.

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  9. "but all of the stories I have ever told on this blog, at least since the very early days, have been made up out of whole cloth."

    Please, please tell me the Christmas elves story was true. I so want it to be true. :)

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  10. One reason I read med blogs is to learn how not to be a crappy patient. If I know what med people consider a good patient, I can relieve distraction which might lead to mistakes, missed diagnoses or later self-medication with bourbon.

    I love the stories, the insider view, the elves, all that. But I'm taking notes on how to make it easy for people to help me when I need it too.

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  11. Dear MM,

    Didn't see this post until I'd written my own, yesterday. Now I realize that my post looks just like yours. I swear it's pure coincidence. I was hoping for comments from anonymous med-bloggers like you but I think readers should see your post so I'll just put a link on my blog to this post. Sorry!

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  13. Such a great information and I've been looking for this..

    ReplyDelete