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.

Surprisingly, 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.

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.