Just say no to e-health records, because your doctor might think you’re a bitch.

Think your privacy is protected because you have nothing to hide?

I was making a follow up appointment at my dermatologist’s office today. On the reception desk right in front of me, in plain view, was a print out of a patient call list. Certainly, this was a minor violation of patient confidentiality in itself. But what caused me real concern was what was written in the column labeled ‘comments’ next to one of the patients’ names: bitch. I couldn’t believe what I was seeing. Since the term is a gendered, hate word used to disempower uppity women, I consider bitch to be as offensive as any racial slur (and am surprised it’s still socially acceptable to use, while racial slurs are not). So, not only was this patient’s privacy being violated in a most unprofessional way, she had officially been labeled as a bitch in a document at her doctor’s office.

What was even more concerning was that this list was a print out, meaning there was also an electronic copy on the office computer. Anyone who uses the internet knows how easily information can move around, accidentally or consciously being repurposed for uses other than the one originally intended (see David Lyon’s concept of leaky containers). Anyone standing at the desk could see this list, but the potential audience of an electronic document is much wider and perhaps even more of a threat. Who knows if that description is in her medical records, or if it will follow her to future doctors. It has the potential to compromise her medical care, for example her doctor might be less open or accommodating given that she is apparently ‘a bitch.’

Yet another reason why paper-based heath records are better for protecting privacy.

PS I’m still trying to figure out what to do about this discovery as it is in violation of Ontario/Canadian privacy law, and I’m certain whatever ethics/codes govern Ontario doctors. I wanted to tell my doctor, but my next appointment isn’t for another year and there is no way to get to her unless I go through a receptionist.

Edit (July 21, 2011): Based on some of the feedback I’ve been getting, I’d like to further clarify that my main point was to highlight the unprofessionalism of what I saw at my dermatologist’s office. My point about e-health records was secondary, but seems to be getting more attention, so I’ll support/clarify that argument a bit more with a few other examples (below) of why digital records pose more of a threat than paper. And no, I am not saying paper is 100% safe and private, rather that it is more private than digital records. Furthermore, arguments that I should trust doctors to be professional and keep my info safe with digital records because they will follow the strict protocols are pretty much invalidated by what was written in that patient call list. Indeed, it is human error/unprofessionalism that is the main problem here, but the properties if digital databases/ICT magnify these issues.

1.) Digital records threaten privacy through obscurity – see the Facebook newsfeed example

2.) Digital records allow for function creep and leaky containers – see the reuse of a digital database of photos taken for driver licensing being used to identify potential criminals

Just say no to e-health records, because your doctor might think you’re a bitch.

6 Responses

  1. You could label somebody as ‘bitch’ on paper just as easily. So why is this a specific argument against e-health records?

    I do agree that they shouldn’t carelessly leave this information on a screen for others to read. But this is not a general argument against e-health, but against the measures that hospital takes to protect the privacy of it’s patients. It could just as well happen with paper documents.I can easily scan or take a picture of paper documents and put them online.

    Pavino Ciambellone July 21, 2011 at 5:22 pm #
  2. I am not sure I follow how this is a case for the security of paper records. Had paper not been used you wouldn’t have seen the list. And the labeling of that individual is unacceptable regardless of the medium on which it was stored.

    To clarify, was “bitch” written by pen or was it printed text?

    I find it disheartening when it’s argued that a technology should be avoided because it can be used for evil (or ignorantly) and not just for good. The issues of privacy here are not limitations of the technology but the people using it. These bad practices, as your story illustrates, cause privacy issues regardless of the technology being used.

    wabasso July 21, 2011 at 8:52 pm #
  3. @wabasso – it was printed text.

    i totally agree with you that it is unacceptable to write such a label, no matter how it is stored. my point was more to say that is it even more dangerous for it to be on a computer rather than just written in with a pen since it can go much further and be seen by more people.

    digital technology violates privacy through obscurity. its like when facebook created newsfeeds: http://www.mendeley.com/research/facebooks-privacy-trainwreck-exposure-invasion-and-social-convergence/

    kate raynes-goldie July 22, 2011 at 12:00 am #
  4. @Pavino thanks for your comment!

    my point, as i mentioned in my reply to wabasso, was not that privacy is 100% protected in paper documents, but rather that it is easier to protect. you can’t hack, email, or tweet paper.

    kate raynes-goldie July 22, 2011 at 12:11 am #
  5. @Kate

    You can e-mail and tweet paper easily. You take a picture or scan it as a pdf! :)

    Paper is easier to protect, but it has the disadvantage of being more difficult to transfer. In my country, there are cars driving around 24/7 with medical documents. It’s more safe, but it is also much less useful. Patients literally have to wait for the car to arrive with their documents.

    If you only focus on the disadvantages of digital records, then of course paper records will win. But if you look at the advantages AND disadvantages, then I think digital records will win. Especially if you take into account that you can design the system in such a way that the disadvantages are minimized.

    Digital health records are inevitable in my opinion.

    Pavino July 31, 2011 at 8:15 pm #
  6. Kate,

    I agree that online records as a form of sousveillance can be problematic, but also I think there’s certain aspects of the reverse. For example, just as this places the patient under the surveillance of a larger system of oversight be insurance companies and government who can access private information, there’s also the possibility of “undersight” (sousveillance or inverse surveillance) in which, as you did, wrongdoing by doctors can “leak out” or be discovered.

    David Lyon’s “leaky containers” totally miss the two-sided nature of veillance == leaks flow both ways, not just top-to-bottom (the few watching the many) but also bottom-to-top (the many watching the few).

    Did you manage to see the doctor’s name?

    Whereas it makes sense to keep the patient’s name private, it might make sense to make the doctor’s name public == let the doctor “face the music” so to speak.

    That would be an interesting example of sousveillance and the inverse leak of the container flowing backwards, i.e. we now live in a veillance (sur and sous) society not just a surveillance society.

    Steve Mann January 6, 2013 at 9:58 am #

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