Does New Data on Patient Confidentiality Change Anything?

The recent NPR-Truven Health Analytics Poll data illuminated some interesting data. In this poll, 3,000 Americans were interviewed about their concerns (or lack thereof) regarding their health records.

worries-about-health-records-by-location_custom-3bbb3a48b149d38b528a203d5bbf4d564c9a8fad-s400-c85Surprisingly, by the responses it seems at first glance that American patients are not all that concerned about the confidentiality of their health records. As per the executive summary, “16 percent of respondents have privacy concerns regarding health records held by their health insurer. 14 percent have concerns about records held by their hospital, 11 percent with records held by their physician, and 10 percent with records held by their employer.”

What I find more interesting – and you can view the full report here – is the way answers vary within patient demographic groups.

For example, privacy concerns seem to increase with increasing level of education, and also differs per generation. Those older than 65 appear to have fewer concerns about their records, while Generation X seems to be most concerned. Interestingly, patients who are either a) younger or b) more educated are more willing to share their health records anonymously for health research. I’m no analyst or sociologist, but I think the data is fascinating.

NPR wrote an article on the matter, titled “A Worry In Theory, Medical Data Privacy Draws A Yawn In Practice“. I think to claim that patients “yawn” at privacy is a bit of an overstatement.

I brainstormed some reasons why people might not have privacy concerns:

  1. they don’t know that they should be concerned (anecdotally, this could be responsible for the differences in opinion with differing levels of education)
  2. they have never had any reason to worry (4,9% of respondents had been notified that there records had been compromised)
  3. they don’t believe that compromise could harm them (e.g. a respondent who is in general good health – we don’t know this spectrum of the respondents in the poll)
A recent PostSecret on topic.
A recent PostSecret on topic.

The reason an AMERICAN report has intrigued this SOUTH AFRICAN is because we have a metamorphosing patient population. Our patients are moving from the stage of ignorance about their privacy into a stage of greater interest in their own data and awareness of the risks of undue exposure.

One cause is likely the boom in post-Apartheid education. The level of education in many schools still leaves much to be desired, but certainly many South Africans today have access to opportunities they would not have had pre-1994.

As smartphones and internet connectivity increase in Africa and South Africa increase, our populace also becomes more informed.

But South African people are also exposed to much stigmatising disease. HIV and TB still carry a heavy stigma here, despite efforts to alleviate it.

If a medical procedure (or a disease process) carried a 10-16% risk of adverse outcome, we would not really refer to it as low-risk, so I would hardly say that patients “yawned” about their privacy – but one could certainly say that concerns are not as high as suspected. If I had had to guess before reading the report, I would have guessed concern-rates in the region of 80%.

I would love to see a similar poll done in South Africa, although EMR is still pretty scarce here. Would data like this change my approach to medical practice? Not really. By principle, we should still protect our patients’ records – not only for our own protection, but also for theirs.

The biggest value that this data has for me is more qualitative: it helps me to UNDERSTAND.

Because, you know: I’m such a nerd.

Another recent PostSecret - I do NOT condone this, but I am not really surprised that it happens.
Another recent PostSecret – I do NOT condone this, but I am not really surprised that it happens.
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5 thoughts on “Does New Data on Patient Confidentiality Change Anything?”

  1. Interesting!! As for the last postsecret, I’m not surprised but I could never ever do this. I mean, not because I’m particularly moral but because I’d be way too scared of getting caught.

    Actually, let me amend that. I could morally never be okay with looking at the medical records of friends and family (unless they had given me permission), but I’m always so tempted to look at my own. I’m just too scared of getting caught.

    I still don’t understand why I’m not allowed to look up my own information. Drives me nuts.

    1. Dude! You should read The Patient Will See You Now by Eric Topol! I’m reading it now and then posting my review. It addresses the matter of patients having access to their records directly and basically: he agrees and I agree. It’s your information. Bam. I actually want to start a GP practice that allows all patients access to their records. Anyways. See if you can find the book – I would LOVE to discuss it with you!

  2. One of my colleagues google his patients in case they are famous or rich or important. I think people judge others by a lot of things, including health history. There are very strict confidential laws in Australia about EMR, but most patients are more worried about us losing it (not having back up) than it being secure!

    1. I guess I don’t see why googling them is such a bad thing in anycase… If it is on the internet it is visible to all, right? I guess there’s a lot to be said of that being “patriarchal” but I can understand the need to know…
      As for losing records – yeah! I can’t say I’ve had patients worried about that but I certainly am! Especially when we need to put in special requests for scarce medicines etc, not having all the patients’ records is a NIGHTMARE.

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