A questionnaire that examines patients’ adherence to recommended drug regimens has stirred controversy.


Pay up or retract? Survey creator's demands for money rile some health researchers

Last June, a health care researcher in the United States was clearing out her email when she came across a message that looked like spam. She was about to delete it when a name in the subject line gave her pause: Dr. Morisky.

The message concerned an abstract that the researcher and two colleagues had published in a journal just days before. It asked whether the researchers had obtained a license for a copyrighted questionnaire, called the Eight-Item Morisky Medication Adherence Scale (MMAS-8), that they’d used in the study. The scale helps predict how likely patients are to adhere to a drug regimen—an important issue, because a lack of adherence can worsen health and is estimated to cost $300 billion a year in the United States.

The researcher, then a graduate student, says she had contacted the scale’s author, public health specialist Donald Morisky of the University of California, Los Angeles, for permission to use the tool. She never heard back. Now, Morisky and a colleague, Steve Trubow, were demanding $6500 for its use. Stunned, the researcher replied that she couldn’t afford that, but offered $200. The reply came about 3 hours later: “Unfortunately … we can’t reduce the fees. … We will turn this case over to our lawyer.”

The researcher—who declined to be identified on the advice of a university attorney—isn’t the only scientist to clash with Morisky. Over the past decade, he has moved aggressively to protect his intellectual property, demanding payments of as much as tens of thousands of dollars each from hundreds of researchers. At least two teams have withdrawn papers rather than pay. Other authors have resisted, questioning the ethics and legality of the requests.

Morisky is well within his rights to seek payment for use of his copyrighted tool. U.S. law encourages academic scientists and their universities to protect and profit from their inventions, including those developed with public funds. But observers say Morisky’s vigorous enforcement and the size of his demands stand out. “It’s unusual that he is charging as much as he is,” says Kurt Geisinger, director of the Buros Center for Testing at the University of Nebraska in Lincoln, which evaluates many kinds of research-related tests. He and others note that many scientists routinely waive payments for such tools, as long as they are used for research.

Morisky’s scale, copyrighted in 2006, is available for more than 110 health conditions and in more than 80 languages. It asks basic questions, such as: “Have you ever cut back or stopped taking your medication without telling your doctor ... ?” The survey became popular in health research after it was validated in a 2008 study by Morisky, but other similar tools are available.

Why not provide the survey free to all scientists? In fact, Morisky and Trubow say they have allowed researchers to use free tests more than 1 million times, including more than 500,000 times in China. But Morisky also argues that the scale is an important tool for treating patients. “I am trying to save lives, and this is my legacy.” And by enforcing his copyright, he says he can ensure researchers use it correctly. Some researchers “are taking counterfeit MMAS off the web and putting patients at risk,” Trubow alleges. Using improper scoring methods could “score an adherent patient as nonadherent, and a nonadherent patient as adherent.”

Trubow, who is not a scientist, says he has contacted “hundreds” of scientists, mostly in the United States, about alleged copyright violations. In about half of the cases, he claims researchers used the scale incorrectly because they didn’t have access to Morisky’s proprietary scoring algorithm. He asks researchers to retroactively license the test, with charges ($1 per test for English versions or $1.50 per test for translations) typically linked to the number of times they administered it. In the past, Trubow and Morisky say they have recalculated some scores “by hand,” so they added fees for their time.

In the other cases, Trubow says the alleged infringers have obtained and used the algorithm properly, but without permission. In those cases, Trubow says he charges between $1200 and $1500, and asks scientists to correct papers if they don’t cite Morisky. 

Researchers, however, can make the licensing headache disappear by retracting or withdrawing the offending work. One research group in Malaysia retracted a 2016 paper in the International Journal of Integrative Medical Sciences within hours of receiving a demand from Trubow for a $750 fee. Another group in Ghana opted to withdraw a submitted paper after Trubow intially asked for a fee of $500 (which the researchers raised by getting a loan against their salaries from their university). Trubow then increased the demand to $2000. The team now plans to cut the survey data from the paper and resubmit it.

Trubow confirms he billed the Ghanaian team $2000, but notes that Morisky had charged a Rwandan institution the same amount. He wrote: “If you can train and certify the folks in Ghana on … [using the MMAS-8] and edit their article for infringements for $500, let me know.”

Harrison Alter, an emergency medicine researcher at Highland Hospital in Oakland, California, says his group paid $500 in 2015 to use Spanish and English versions of the scale. When they asked to renew the license this past July to collect follow-up data, the price jumped to $2000. The paperwork also stated the hospital would face a $7500 penalty if researchers failed to administer some additional tests on anxiety and depression. Alter calls those terms “absurd and predatory,” but his group still tried, unsucessfully, to negotiate a lower-cost renewal. Trubow says the price was already discounted, and that Alter’s group illegally used the survey “long after” its license ended.

Some scientists fight back. Researchers with GlaxoSmithKline used a four-question version of the MMAS for a study published in 2010 in BMC Women’s Health. After Trubow wrote to complain, a lawyer for the company rebuffed his payment demand, arguing that the four-question scale is in the public domain. Trubow replied that his lawyer would work “to remove the article,” and notified the journal about the dispute. The journal has not retracted the paper, but has added a note saying some portions “have been removed due to a reported legal dispute.”

Researchers could avoid the whole issue by using an alternative tool or developing their own, Geisinger notes. But for now, he says researchers ignore Morisky’s warnings at their peril. The consequences could be particularly severe for graduate students. Under guidelines from the American Psychological Association, for example, psychology students who commit copyright violations can face expulsion from their programs.

A recent shift in Morisky’s strategy could reduce the friction. Trubow says he will stop charging individual scientists to use the scale, and will instead push institutional licenses, which can cost several thousand dollars. The pair plan to focus on hospitals, clinics, and drug companies both in the United States and abroad.

In the meantime, Morisky is facing questions about whether he properly discloses his financial stake in the scale in his publications, including in his 2008 validation paper in the  Journal of Clinical Hypertension. And the health care researcher facing the $6500 request is in legal limbo. Trubow set a payment deadline of 17 July, but that date passed with no further communication. “Personally, I’d like no one to ever use his scale again,” she says. “It’s pretty good, but not if he’s going to be this way. This was the worst thing that has ever happened to me in my career.” 

Adam Marcus is co-founder of RetractionWatch. This story was produced under a collaboration between Science and RetractionWatch.