Diagnostic test takedown by copyright bullies

The New England Journal of Medicine report on how the authors of key screening test, the Mini–mental state examination, have initiated a take-down of an open, validated and freely-available equivalent due to it also asking test-takers to recall three words, a string of numbers and some basic questions about the date and location.

The Mini–mental state examination, commonly known as the MMSE, is most widely used to screen for cognitive impairment and requires little specialist knowledge in neuropsychology, so it has become the evaluation of choice for most general doctors.

As most people with dementia are managed by general practitioners, the majority of people with dementia are likely to rely on the MMSE for their diagnosis.

The copyright is genuinely owned by the creators but after more than 30 years of it being freely copied without complaint the authors have initiated a copyright clampdown, now charging $1.23 per copy through a company called PAR Inc.

Disappointed by the cash-in, Harvard neurologist Tamara Fong created and validated an open-access 16-item test to do the same job which she named the Sweet 16 (word to the wise: don’t name your test something which could get you in trouble for Googling).

Among other things, the Sweet 16 contains a part where you are asked to remember three words, a part where you are asked to remember a string of numbers and a part where you are asked to say the time, date and location.

As with many cognitive tests, these short tasks are also part of the MMSE.

The Sweet 16 is now no longer available online due to a presumed copyright action by the MMSE authors and publishing company.

The New England Journal of Medicine notes:

For clinicians, the risk of infringement is real. Photocopying or downloading the MMSE probably constitutes infringement; those who publish the MMSE on a Web site or pocket card could incur more severe penalties for distribution.

Even more chilling is the “takedown” of the Sweet 16, apparently under threat of legal action from PAR (although PAR has not commented publicly). Are the creators of any new cognitive test that includes orientation questions or requires a patient to recall three items subject to action by PAR? However disputable the legal niceties, few physicians or institutions would want to have to argue their case in court.

Cashing-in on a simple and now, clinically essential, bedside test that you’ve ignored for three decades makes you seem, at best, greedy.

Taking down open-access equivalents because they also ask people the location and date and to remember a handful of words and numbers makes you a seem like a cock and a danger to clinical progress.

The NEJM again:

…there is a clear clinical benefit to using well-tested, well-validated, continually improved clinical tools in complex patient care — as demonstrated by the MMSE’s use before 2000.

In a sense, copyleft is how academic medicine has always been assumed to work. Restrictive licensing of such basic tools wastes resources, prevents standardization, and detracts from efforts to improve patient care.

This is really disgraceful behaviour and the MMSE authors and PAR Inc. should reconsider their attempts at stopping independently developed diagnostic evaluations because they include simple memory tests, but hopefully the event will lead to wider understanding for the need to have open tests for clinical assessment.

Link to NEJM on takedown of essential clinical tests (via @deevybee)

13 thoughts on “Diagnostic test takedown by copyright bullies”

  1. How can they copyright this test? Surely it could be quite easily rewritten to keep concepts (which are designed to test established modes of diagnostic evaluation)behind test and avoid direct quotes?

  2. Perhaps what’s needed is a medical equivalent of the Electronic Freedom Foundation. No individual user of the tests has enough skin in the game to justify a lawsuit, but an industry group could readily challenge this kind of abuse. I doubt if the broad claims that are being made here (use of several similar, but not identical, questions) would hold up in court.

  3. Its use has been a standard of practice for decades. The failure to use it will result in patient harm. Therefore, it should be argued that it cannot be claimed under copyright.

  4. This case is a bit more obvious of social justice. My coworker claims that hackers have made articles from PLoS One “freely available” in the name of social justice as well. Access to scientific information is tricky; if it is a matter of need, you’d think the government could strike a deal with the creators to make it somehow profitable for both parties.

  5. We had a departmental email warning us about this in May. It wouldn’t be hard to develop an alternative that avoided ‘copying’ components of the MMSE and then make this freely available: the ‘payoff’ for the developers would be citations of the development paper.

    Done properly it should be possible to improve on the MMSE (as the Sweet 16 appeared to do).

  6. Although still many people regard the MMSE as a fast and handy screening test of dementia, it should be remembered that Folstein’s never devised their MMSE as such. In fact it is a very bad screening test due to its marked ceiling (and floor) effect being notoriously insensitive at the beginning of the syndrome. It was made as a follow up on cognitive involution in patients with already documented Alzheimer disease. Unfortunately the ease of use and wide dissemination by media and industry has promoted it to a “screening” test. This promotion is undeserved.

    Dr. G. Otte, neurology

  7. This is just the beginning. The Great Horizontal is disrupting all institutions governed by protected knowledge. The interesting thing in this case — and what we’ll see more of downstream — is that “open” in terms of use by the medical community means “open” in terms of everybody else. The shift of authority from doctor to patient is surging forward, because “the needs of the patient are different than the needs of the doctor.” This new world demands different laws, especially in areas of copyright. Greed is the only thing at work here, and that won’t last long when patients who are increasingly organized and can talk to each other start protesting.

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