Over the weekend, I got an email from Thomas over at Hope for Pandora. Thomas blogs about science and society from a lefty point of view. Now that he's about to start in on clinical medicine, he's hoping to blog about his patient experiences, too.
Not without reason, he is fraught with panic (OK, it's really just mild anxiety) over the potential for disaster:
I was wondering if you could offer me any suggestions about blogging experiences on the wards such that I am not out of compliance with HIPAA, but more importantly, I respect patients' privacy.
He has some of his own ideas, to which I added the following:
I change enough about the story to make sure that even if the patient themselves read it, they wouldn't know it was about them. I change patients' genders, disease processes, employment details, etc., and often also change the nuances of the issue around which an interaction occurred. I remember reading somewhere that one doc blogger actually asks her patients if they're OK being written about. I'm not sure that's necessary, although I suspect most people would be fine with it.
It's enough when patients recognize me outside the hospital. I'd hate for them to recognize me--or worse yet, themselves--in a place where both of us are even more vulnerable.
I now put the question to you, my sweet soybeans: how would you tell stories about clinical interactions, or want them told?
While you guys do that, I'm going to get back to reading about important medical topics.
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As a soon-to-be-med-student, and as a sufferer of a chronic illness (thus leading to much doctor interaction and frequent hospitalizations) I think I can probably comment on this knowledgeably.
I'd be cool with anything that did not relate to non-disease personal issues (patients get especially vulnerable in the hospital, and anything that's not directly related to my illness should be left out of any write-ups, even if it's an issue that you're interested in). My health is a topic for scientific discussion; personal issues related to it aren't.
And, certainly, so long as I wasn't identifiable. If I wasn't identifiable to myself, then I'd certainly not have any objections at all.
I liked your suggestions and tried out my first post. As uncomfortable as I am embellishing original stories (I am after all a scientist!), I think my concern for my patients' privacy and confidentiality will trump my penchant for accuracy. As long as the embellishment is believable (is it here?), maybe that will make it more interesting to readers...
When I'm telling stories about me as a person, or as a patient, I feel like the story belongs to me; I don't hesitate to tell it (as my blog will reveal!).
When I'm telling stories about patient interactions, I believe that the only part of the story that belongs to me are my feelings about it. So, I keep that true, and confabulate the rest. Usually, I try to keep the confabulated things true to the meaning of the story (i.e. a preterm baby in a story represents a preterm baby in real life; a fetal demise in a story represents a real fetal demise) and try to keep the character of what was going on, while trying to make sure that if any of my patients read my blog they wouldn't see themselves in it (with the exception of patients who think, "Wow, she's writing about what I just went through", which I think isn't the same).
You kill me. I cruised over to your blog AFTER checking out today's Cheeseburger cats. Love you!
I really don't think I'd mind my doctor writing about something medical as long as others would not know it was me being written about. I might like to know s/he was writing about it just to see how others would comment, actually.
If the doctor were writing about some aspect of our interaction, like how I was being frustrating or something, I think if I saw myself in that post, I'd just be disappointed that the doctor hadn't been able to raise the problem with me directly.
And, certainly, so long as I wasn't identifiable. If I wasn't identifiable to myself, then I'd certainly not have any objections at all.
He brought up the code I mentioned here, and was appalled by the fact that procedures were still being done on a patient long after he'd died because the practitioners needed practice.
Signout reader named Benjamin Langer, who himself has a very nice critical piece on intelligent design in the current edition of SCQ.