Tuesday, March 29, 2011

Blogging and privacy

As some of you know, I am a regular blogger for Mothers in Medicine. Recently, there have been some issues about the posting of patient information on this blog, and a new blogger expressed concern about how many details you need to change to really "de-identify" a story. Naturally, I have a few opinions about this.

When I was a resident, I remember there was some scandal because a patient had an arm amputation and apparently a staff member took a photo of his amputated arm "inappropriately." I'm not sure what this means. I assume the photo was not taken for medico-legal reasons or for academic research purposes, because it probably wouldn't be such a scandal. We hypothesized the photo ended up on something like Facebook or MySpace or something, and didn't just stay quietly on the staff member's iPhone. I don't really know any details.

I'd hope it's pretty obvious something like that is inappropriate. I read a story about some nursing student who got kicked out of school for posting a photograph of a placenta, although was later restored. And then there was the med student who took a photo with a cadaver and got in trouble for that one.

So I think it's safe to say that you should never post any patient-related photos taken at work. That's the obvious part.

But how about patient-related stories, if several of the details are changed and disguised? Technically, I guess it's okay, right? HIPAA isn't being violated. I can't say I never did it, because I have. It's hard not to. I mean, that's a huge part of our lives.

However, I do think there's a risk. I think even with several details changed, there might be a small chance of the patient will discover the blog and recognize themselves. This risk is probably extremely small if you don't post many details and blog anonymously, but it's possible. I'd like to think that on the rare occasion I post about a patient (although I try not to do this), I'm safe in doing so because I both change details, don't post more than a few sentences on anyone, and don't post about any patient I've seen in the last 3-4 years. But is it absolutely 100% safe? I guess not.

You have to weigh the risks and benefits. Is sharing this story with the public worth the chance of being discovered? Maybe. Maybe not.

(Also, I think the risk of having someone discover your true identity is higher than you think. After posting one or two details about yourself, such as what state you work in and what field you do, it's not that hard to use google. Mention one of your hobbies and a personal detail or two, and that's the end of it. It's kind of the equivalent of Superman putting on some glasses and then being "unrecognizable." And some people outright post under their real names, which amazes me.)

And then there's non-patient stories that could get you in trouble...

Several weeks ago, I made a post about a student at work who was annoying me. Although this was just a student (so no HIPAA violation) and I changed details of the story so I think the chances of the student discovering the post were basically nil, this experience made me realize that it is a risk to post anything about my current job. To me, it isn't worth that risk. So I will never again be posting any specific stories about my current job or people who work there.

My weekly whine this week was supposed to be a story about a junior resident I worked with during residency who annoyed me A LOT. I basically wrote a manifesto about his unbelievable behavior that I thought was pretty entertaining. But I thought about it and I realized that the field I'm in is pretty small, and there was a small but reasonable chance that he might read it and recognize himself. And although I hated working with him, I didn't hate HIM. So I nixed the entry. Of course, there are plenty of residents or med students that I've written negative things about on here who I would LOVE to see the entry about them. I'm tempted to do some forwarding.

When I write an entry, I try to imagine what would happen if everyone I know read the entry. If there would be any consequence to this beyond a little embarrassment, I don't post the entry. (Well, usually.) I don't believe any blog is entirely anonymous and I think it isn't worth the risk. I think all bloggers are taking a bit of a risk, but obviously we get something out of it too. Blogging is fun! And it's way less risky than skydiving.

20 comments:

  1. This is definitely a concern of mines as well, especially since I am still on rotations. I have been wanting to write about this resident from hell but everyone I know will know who im talking about.

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  2. Anonymity in blogging is such a thin veil and the more popular your blog, the thinner the veil. Thankfully, with my 5-7 readers I am pretty safe.

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  3. Berry: Yeah, while it's much safer, it's not nearly as satifying to blog about the resident from hell five years after it happened. I needed to vent when it happened though, so I used to blog about her in locked entries that were only visible to my friends. I'd say that's pretty much zero risk.

    SuFu: Very true. This is just a reminder to myself to be even more careful, now that I'm posting more than just cartoons.

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  4. Changing patient data is NOT good enough when writing about patients, in my opinion.

    If I do post about a patient encounter,m I try to adhere to these standards:

    1). If I told the patient I would change the details of their identity, would they allow me to write them on the internet?

    2). Would I be upset if I knew my doctor, even if he changed my details, was blogging about me on the internet? Or my wife? Or my child?

    There are a lot patient stories out there that would probably pass this test, most people would be okay with the positive stories that many write, but there are a LOT more that probably wouldn't. It makes me angry and upset when I see people writing about how fat the patient was, how many people they had sex with, what sort of discharge they had, the way the smelled etc etc etc (not that you do this Fizzy).

    I think we as a blogging community need to start checking one another, calling each other out when we show this sort of self serving behavior in our writing, because really, those posts are about nothing more than "hey, look at me and what I have to deal with. look how cool/funny/smart I am".

    Just my two cents.

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  5. IMO you're not really safe if your blog is open only to your friends. What if they read the post on a public computer and then forgot to log off when they walked away. Just saying.

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  6. OMDG: I see what you're saying, but none of the friends with access to my blog were in residency with me, personally knew any of the people I worked with, or even lived within a thousand mile radius of me. So even if they left my posts logged in and some other random person saw it, they probably wouldn't be terribly interested. The real "risk" was Jessica finding the entries via google or something, which I don't think would have been possible.

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  7. P.S. Keep up the good work. I found your blog at 2 AM when I was in between chemo treatments on a variety of cell lines. The cartoons made those weeks bearable.

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  8. Still, it's a small world. I remember blogging about some guy at Master's swimming way back in 2006 when I had practically 0 readers. It turned out that he was reading my blog for what reason I cannot possibly imagine. I have no idea how he figured out who I was.

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  9. I agree with ER Jedi / OMDG on many of their points.

    My current paranoia over posts comes from being a student (again). I re-read things and only publish something that I wouldn't be embarrassed over / reprimanded for writing if faculty saw it.

    Even though I don't use my name I don't hide my face. Despite my use of a moniker I have been shocked at the number of people who have found my blog. One of my classmates told me that asystole came up as the first hit on google when he searched "anatomy spotter".

    Also, once at the hospital I found my blog as an icon on a computer desktop. YIKESSSS!!!!!!

    I have to think of it using the 'shaking a pillowcase of feathers from the top of a building' metaphor. Those feathers can travel far and wide, and will be impossible to reclaim once you hit the "publish" button.

    I keep a private blog for the days I really need to vent.

    I enjoy your blog a lot and have never thought you compromised patient confidentiality in any way. Hilarious *and* professional is a hard combo to achieve but I think you've succeeded.

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  10. I just want to second Albino in that Fizzy, I've never thought you've crossed a line in any of your posts. Even that whole med student post. It stirred up a LOT of conversation, but I think most of it was productive and not really detrimental to the student

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  12. OMDG: You're right and if I were truly so terrified of Jessica reading those posts, I wouldn't have made them. But I do think that locked posts are pretty low risk.

    ABB: I try to make this a blog that makes fun of doctors (and in particular, people training to be doctors), mostly in kind of a general way. I'm a pretty self-depricating person, so that's sort of the point of the blog, to make fun of my own stupidity throughout training. And also to get a bit of revenge on the doctors who were total jerks to me and deserve it! I could never have written any of this stuff when I was actually IN training, because if anyone had discovered it then, I would have been in big trouble. If anyone I worked with now found out I was making fun of some med students I went to school with, I don't think they'd particularly care. And I really try to avoid talking about patients, except in very general ways. I'd be psyched if I saw this blog on someone's desktop at work.

    Threehills: Thanks, and I think a lot of people missed the point of that post. They saw "med student" and "annoying" and just flew off the handle. But I'm really glad it happened, before I posted anything more personal than that.

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  13. I've got to be honest, I take a bit of a different tack. I look at it as no different than telling stories over dinner to family. Every one of us, at some point or another, has told a story to a friend or family member about a patient encounter or co-worker, and we don't think twice about it. Yes, I acknowledge this kind of forum is much larger and more penetrant, but I think the principal remains the same. Of course, one should still change details and make every effort to ensure patient privacy, but I don't think you should be discouraged from telling these kinds of stories, so long as proper anonymity is adhered to.

    [Of course, I say this as someone who writes a much more "storytelling" blog, so I have my biases]

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  14. Fizzy -- Don't get me wrong, Jessica totally deserved to be blogged about. And I also totally enjoyed reading those posts.

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  15. iamnothouse: I don't think there's anything *wrong* with it per se. Like, I'm not personally offended by it. But I do think that the more details you add, the more risk you take.

    OMDG: It's my secret fantasy for Jessica to somehow discover these posts about herself and feel mortified. It would never happen though because I'm sure in her head, I deserved everything she dished out. When in reality, I only deserved maybe 50% of it :)

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  16. I'm in med school now, and we just had a whole set of lectures on this topic. The whole series ended with a general lack of consensus as to what students/doctors should be posting online. The opinions varied from "post whatever you want" to "delete your facebook account". Obviously, I'm somewhere between there. I like to look at it similarly to how you stated; I simply don't post anything I wouldn't want everyone in the world seeing.

    I'm kind of curious what Dr. Grumpy thinks of this topic given the specificity of a lot of his posts.

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  17. Great post. As I'm starting to have more patient interaction, I often find it hard to write about comfortably, though I would really like to. I try to err on the side of caution...like on my post about GI service, I listed conditions rather than any stories/details about patients, because it felt safer.

    My mom found my blog after 4 years of secrecy, and if she could find me on a random google search, anyone could!

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  18. Adam: Yeah, that's why I don't post anything on Facebook. Also, because I'm an adult. (j/k :)

    I think while Grumpy does post a lot of dialogues, he doesn't post any specific patient details. So I think he's OK. Or relatively so.

    Kyla: HOw did your mom find your blog??

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  19. I agree that one should be very careful what one writes on line. Anonymity is not assured. I blogged about this late last year (http://is.gd/lbFehU). Note also the comments section which includes the story about "Flea," who thought he was anonymous but was nailed while on the witness stand during a malpractice trial.

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  20. One thing I've learnt in 5 years of blogging and following medical bloggers.
    Online anonymity doesn't exist. Especially if you're also active in other social medial sites like twitter, facebook, etc,.
    I like your personal guideline "I try to imagine what would happen if everyone I know read the entry. If there would be any consequence to this beyond a little embarrassment, I don't post the entry."
    Follow that and you won't be in trouble when (Note: NOT if) someone "outs" you.

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