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December 27, 2012 3 Comments

First, Do No Harm: Writing, Blogging, Tweeting, and HIPAA

Medical students expelled.

Residents under investigation by state Medical Boards.

Practicing physicians in trouble with their Chairs, colleagues, communities.

Hurt and angry patients and families.

Why?

Because patient stories, written by medical students or doctors, appeared in public – on Facebook, blogs and elsewhere – in a way that was recognizable and unauthorized.

Don’t let this happen to you.

Of course, if you’re a health professional in practice or training, you were there for the story you want to tell. And maybe you can’t forget what happened. Maybe you’re angry or moved, inspired or frustrated. Maybe you think the world needs to know. Maybe you just need to get the story off your chest. And maybe you see what happened, at least in part, as your story.

Those are all great reasons to write a story or essay. Write what you have to. But before publishing it, remember two things:

1)      A patient story is, first and foremost, ethically and legally, the patient’s story.

2)      There is a difference between needing to write something and needing to put it out into the world.

A good way to decide whether or not to publish a story or make it public via social media is to think about whether the point of telling the story is to help you or to help others. (Although these aren’t mutually exclusive, it’s good to be clear on your primary motivation.)

If it’s to help you, would you have done what you needed to do just by sorting out your thoughts and feelings in writing? Would it be enough to show it (with the patient de-identified) to select friends, family members, or colleagues?

If it’s for others and you want to publish the story in a journal, on a blog, on Facebook in a newspaper – basically anywhere, you need to do one of two things:

 1. Get the patient or family’s permission

  • Medical journals often have permission forms. See JAMA form here. Some simply require the author attest in writing whether s/he has permission.
  • Non-medical media rarely have forms but that doesn’t mean you don’t need permission.
  • Whether or not a form is required, consider having the patient fill one out as a safeguard. Use one from a medical journal or see if your institution has a general release form.

Or

2. Change the characters and story enough that they are unrecognizable

  • Think about what matters, from demographic details such as gender and background to the illness itself. Does it matter that he had kidney disease or might some other chronic, progressive disease serve the same function in the story while protecting the actual patient’s privacy?
  • Note: different journals and media have different rules
    • Some allow composite characters, some don’t
    • Some allow you to change facts such as gender or disease while others allow only omissions and decreased specificity of detail
  • Whatever you choose, you should note that you’ve made changes. This is often done with either a footnote or parenthetical comment in the text.

If you can’t get the patient’s permission and find changing key identifying details inconceivable, consider that you’re still too close to the experience. Put it away for a while and come back to it or ask someone for help.

Write, blog, post, and tweet. But do it safely and fairly, responsibly and professionally – for your sake and, most importantly, for your patient’s.

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3 Responses to First, Do No Harm: Writing, Blogging, Tweeting, and HIPAA

  1. Brian Secemsky December 30, 2012 at 10:45 am #

    Hey Louise,

    This was very useful. The link to JAMA unfortunately did not connect to the page, can you relink it?

    Thanks and happy holidays!

    • Louise Aronson December 31, 2012 at 10:09 am #

      Hi Brian,

      Thanks so much for letting me know. I’ll redo the connection to the JAMA page now!

      Louise

  2. Prasenjit September 10, 2015 at 4:08 am #

    Hi Brain,

    JAMA page connection is not uploaded upto 100 BIT connection, Need to know what emphasis are to be done here.

    Thanks,
    Pras

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Resources:

New York Times Health: http://newoldage.blogs.nytimes.com/ and http://well.blogs.nytimes.com/

Health in Aging: http://www.healthinaging.org/

Family Caregiver Alliance: http://www.caregiver.org/

Talking to Your Doctor: http://www.nih.gov/clearcommunication/talktoyourdoctor.htm

Kaiser Health News: http://www.kaiserhealthnews.org/

NYU Literature, Arts and Medicine Database: http://litmed.med.nyu.edu/Main?action=new

Physician/student/health professional resources

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