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Monday, December 27, 2010

Why I Can't Tell You This Story...

This week, I had many interesting cases in my clinical practice.  One posed an interesting ethical dilemma, and 2 others were interesting medical cases in pediatrics that are relatively rare in primary care.

So, since I have not been posting much lately, I figured these cases would be great blog posts.
...Until I realized that I actually did not feel right about sharing the details of these cases.   Because it is my ethical obligation to adhere to privacy practices. Because I have a duty to protect the anonymity of my patients. Because there is no way to change the story enough for it to be unrecognizable.  Even though the general dialogue would make for an excellent discussion.  Even though you would find it interesting.  Even if it gave me a topic for a needed blog post.

So I was out of luck...or was I?
I then realized it would be (just as?) interesting to talk about privacy practices and the physician-writer dilemma.

You may (or may not) know it, but one of the forms buried in the pile of  paperwork that you get upon registering with your physicians office is their HIPPA policy statement.  HIPAA stands for the "Health Insurance Portability and Accountability Act" and was put into effect in 1996.  It basically states that your medical record is confidential, and details cannot be shared with others without your explicit permission.  You, not your doctor, are the owner of your medical information.  And this is how it should be.

So, then the question arises, who owns a patent's story?

A patient comes in to the office with a complaint, a problem, a story.  I sift through their words, translate them into medical jargon, pick out the important information by asking pointed questions.  I may get all the information I need in a short sentence from the patient (this would make my job easy).  But, more often their story is tangled in a web of (seemingly) unimportant detractors details that I must sort through to get to the gist of the problem.  Once we have clarified the problem (the history), we move on to a physical exam and pair that with laboratory or imaging tests that help us arrive at a diagnosis.  It's a bit more complicated than that, but you get the idea.

So, I can synthesize all of this information into a succinct "case presentation".  I would take the pertinent portions of the history, physical exam and lab tests and present them.  I would formulate a short "differential diagnosis" (a list of diagnostic possibilities for the patient) and ultimately arrive at a conclusion that would hopefully give the patient treatment options and a prognosis.

The patient owns the story.  And their signs and symptoms.  But, after all this medical manipulation, I have crafted it into something quite different than its original form.  So, am I then the owner of that case as the treating physician?

Physicians talk candidly quite often about patients, and, unless they are shared patients, anonymity is typically preserved.  The reason for the sharing of information is to get another physician's opinion about a case and allow for a transfer of ideas.  I believe that most patients would not take issue with the sharing of anonymous medical information between professionals as a point of academic interest.

But, what if I decided to share some patient stories with you, my readers on my blog?  What if I protected my patients by changing the names and details of the story?  What if I decided to write a book that included interesting patient stories?  Are those stories mine to share?

What would you, or the patient, think about that?  Would you be honored that your story was interesting enough to share?  Would you feel that sharing your story in this way may help other patients or doctors?  Or, would you feel betrayed?  That a trust had been broken in this important professional relationship?  Do I have an obligation (ethically, legally) to inform the patient that I plan to share the case?

I do not know the answers to many of these questions, I am just posing them for the sake of conversation.  I suppose the answers are quite personal and different for all physicians.  Right now, as a new physician-writer, I will be erring on the side of caution and keeping these stories to myself.  Or letting enough time pass and wait for other similar cases to come along that can be "combined" to adequately disguise the story.

So, for now, my lips are sealed.
So, what do you think?  Would you take issue with your physician sharing your 'story'?


Rebecca said...

I don't think it's a big deal at all to share a story for a purpose as long as the identity is protected. If you aren't using names and dates then it would be impossible to know who you were talking about, it could be anyone! There are always common threads in any story, it could be anyone in the universe!

Dani G said...

I'm torn. There are so many stories that are similar, but many that are distinct from one another. And we do know that not everyone is willing to put it all out there like some people we know (ahem!). Still, it really should be all about the motive. You'd be sharing to enlighten and educate rather than to gossip.

If it were me, I'd want my doctor to ask me for permission to share my story with others. This has actually happened to us before since we kind of have a pretty good story :) I'm always happy to share, but I think I'd feel violated if I wasn't asked first.

Kate Pantier @ Mommy Monologues said...

I think that as long as the doctor asks me permission and I give it then I wouldn't mind.

I found you through a bunch of clicks from different sites and stumbled upon your blog! So glad I did!

Anonymous said...

I wouldn't mind as long as it wasn't anything super embarrassing.

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