These days, medical professionals often function like actuaries. They calculate and manage risk — identifying the genes, experiences, and habits that shape your odds of illness, and then trying to rein in those mortal probabilities.
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All this risk assessment, approached with proper medical caution, can save lives. But that caution can disappear when patients start assessing their own risk, introducing some tricky ethical territory. And not much represents that buyer-beware dilemma better than the humble health quiz — those online questionnaires that range from built-for-social-media gimmicks (such as the Dr. Oz-endorsed RealAge test) to serious public health initiatives (DoIHavePreDiabetes.org, a collaboration of the American Diabetes Association, the AdCouncil, the American Medical Association, and the Centers for Disease Control and Prevention).
Quizzes may seem rather ordinary but, in fact, they are one of the many loosely regulated ways that Americans get information (or misinformation) about their health. And as hospitals and other service providers turn to digital outreach as a way to connect with patients, they’re giving quizzes too — and giving them a new medical luster that may or may not be real.
A close look at some of those quizzes reveals a world with few clear regulations, and plenty of ethical gray zones. The questions at stake here promise to become only more pressing in the years ahead: When does risk assessment cross over into fear mongering? And what’s the appropriate balance between patient education and outright marketing?
Those issues were on full display when Steven Lubet, a law professor at Northwestern University, recently published an Undark op-ed which criticized a brain health quiz distributed by his Chicago-area health provider, NorthShore University Health System.
The quiz which NorthShore’s website described as “a screening test,” asks patients 23 yes-or-no questions about their medical history and habits. It then “tells” respondents whether they have “a healthy brain” or whether they should consider contacting a doctor due to “one or more risk factors associated with Alzheimer’s disease.” Conveniently, that ominous message also provides a phone number direct to NorthShore’s brain health clinic.
Some of the questions have obvious connections to brain health. Others (such as a question about early onset menopause) have fuzzier links to dementia risk. But, after tinkering with the quiz, Lubet found that even a single “yes” answer would trigger the warning message. The quiz, Lubet wrote, “purports to be making individualized assessments through meaningful screening, but it ends up pushing consultations for nearly everyone.”
NorthShore defended the quiz as a valuable tool for patient education. The bioethicists and public health experts that Lubet contacted were more skeptical. More than a month after Undark published Lubet’s piece, NorthShore added a disclaimer at the bottom of the questionnaire, stating that this is “not a diagnostic tool and is not a substitute for a physician exam,” and added a note describing the quiz as “for educational purposes only.” It also stopped referring to the quiz as “a screening test.” And, even before those changes, NorthShore had apparently tweaked the algorithm so that responding “yes” to the question “Are you worried about your brain health?” would not trigger a risk warning, as it did when Lubet inspected the quiz. But other than that, the quiz itself — and the inclusion of the handy phone number — didn’t seem to change.
The brain health quiz is just one page on the website of a small health care system. But the issues it raised were troubling and complicated enough that I wanted to take a closer look. How widespread were quizzes like this? And what did it indicate about the larger phenomenon of hospital marketing and outreach?
When I shared the quiz with Kim Johnson, a psychiatrist at Duke University and an affiliate of the Bryan Alzheimer’s Disease Research Center, she noted that some of the questions seemed to point to well-established risk factors for dementia — but others, such as queries about educational attainment and eating red meat, did not. “So you could argue that the survey could be alarming to the general public…when there may be no cause for concern.”
“My conclusion,” she added, “is that the survey as written identifies a much larger proportion of the population than is really at risk.”
Through a NorthShore spokesperson, Demetrius Maraganore, the director of Northshore’s Center for Brain Health, declined repeated requests for a phone interview. In a brief statement sent to Undark by NorthShore’s public relations director Colette Urban, Maraganore stated that “the Brain Health Quiz is an evidence-based educational tool for patients. The questions reflect known, increased risks for developing Alzheimer’s or other related aging brain disorders.”
Maraganore attached a paper he and other center affiliates had published earlier this year explaining some of the methodology behind the quiz.
I sent back a list of questions, noting that the paper did not offer specific scientific backing for many of the questions included on the quiz. “We are declining the interview request and stand by the statement we’ve provided,” Urban replied.
Maraganore had told Lubet that an advisory board, including representatives of the Alzheimer’s Association, had reviewed the quiz. In a statement, Mike Lynch, the director of media engagement for the Alzheimer’s Association, noted that representatives of the organization had served on a research committee with Maraganore in 2015. But he said that “the Alzheimer’s Association never vetted or approved the Brain Health Quiz being promoted by NorthShore Health System.”
“The Alzheimer’s Association does not endorse quizzes or community-based screenings as a diagnostic tool,” Lynch continued. “The Alzheimer’s Association strongly opposes the marketing of products and services that promise outcomes related to brain health, Alzheimer’s, or dementia that lack credible scientific evidence.”
All of which led me to another question: Are there regulations in place to hold medical centers accountable for questionable marketing and outreach tactics?
The answer is complex. Medical device and pharmaceutical marketing fall under the purview of the FDA. For-profit hospital marketing can be investigated by the FTC. Nonprofit health system marketing is likelier to fall under a complex patchwork of state-level regulations.
Shortly before NorthShore updated the quiz to clarify that it was not “a screening test,” I had contacted the Illinois Department of Financial and Professional Regulation, which regulates medical practices in the state, to see if there were any regulations governing online screening tests like the brain health quiz. The department did not seem to know what to do with the request, and a department spokesperson, Terry Horstman, declined to speak on the record about the state’s oversight of medical marketing.
“I’ve never seen any laws that deal with these kinds of online questionnaires,” said Nathan Cortez, a law professor at Southern Methodist University who studies the regulation of emerging health care markets. “On less generous terms, you might say this is kind of an effort to drum up business, and it’s not scientifically validated or very reliable. But the hospital’s response to that would be, we’re just trying to get people in to get a full workup and a screening, and we’re not trying to diagnose anyone online.”
“That’s a tactic that I see a lot of mobile health and digital health apps using, where they try to have it both ways,” Cortez continued. “They ask for all this information, and then they make claims as if they’re providing you with some useful, actionable medical information. But at the same time, they also disclaim that there’s any medical use, and that it’s for entertainment purposes only.”
One additional problem is that such disclaimers may not be obvious. Women’s Health Network, a large supplements and medical information company, declares on its website that more than one million women have taken its “doctor-designed quizzes.” When I took a brief thyroid health quiz there recently, though, the result sounded more like a formal diagnosis than anything else: “Right now,” it began, “your body is experiencing a thyroid imbalance.” I then looked and could not see any disclaimers on the page. It’s only deep in the website’s terms of use that a determined reader will learn “this Website does not provide medical advice.” (The company did not respond to interview requests).
Outside of legal questions, quizzes can also raise subtle ethical concerns. Consider the Hereditary Cancer Risk quiz, part of national outreach for a cancer risk genetic screening product made by Myriad Genetics. The brief quiz has a standalone version, but it has also been incorporated directly into many hospital websites. It flags users who may carry genes associated with a higher risk of certain cancers, and then directs them toward information about an in-depth genetic risk screening from Myriad (the cost is often covered by insurance providers, although the company offers installment plans if the out-of-pockets costs exceed $375).
Myriad declined to make anyone available for a phone interview, but it did provide a lengthy statement and responses to emailed questions. In that exchange, Ron Rogers, a company spokesperson, described the quiz “as a free public service,” and said that “genetic testing can help save and improve lives!”
Of course, the company does have an obvious market incentive to find risk-factors. And it requires users to send in some personal information if they wish to see their results. When I ran the quiz by Yael Schenker, an associate professor of medicine at the University of Pittsburgh who has written extensively about the ethics of health care marketing, the sharing of information was one of the concerns she raised, along with the possibility that the quiz “raises anxiety about cancer risk without providing support or counseling to ensure that patients understand this information and that their concerns are addressed.”
Asked why patients need to send in personal information to get their results, Rogers responded, “the quiz is strictly voluntary, meaning people opt-in, and only they decide to participate.”
Of course, at least in theory, it’s possible for a quiz to save lives and serve patients, and to do so within the context of the consumer marketplace. And it’s possible to find many straightforward applications of the quiz format: StayWell, for example, “a health engagement company,” offers very basic risk assessment quizzes, which it calls “health evaluators,” to its hospital and health care system clients. “It’s not just to drive value into a care system,” StayWell chief medical officer David Gregg insisted when I asked how they balance education and marketing. What holds them accountable? “I think our approach was to stay well aligned with existing, well-established mechanisms of assessing risk,” Gregg said, citing the Framingham Heart Study as an example. The company also recently received accreditation for its online content from URAC, a national health care accreditation agency.
Still, the balance between marketing and education is always delicate, and it’s not encouraging to learn that so few checks are in place. After all, when it comes to medical marketing, customers are uniquely vulnerable. As Schenker points out, medical professionals carry a special kind of authority. “To take advantage of that, I think, is very problematic. As we come into a car dealership with a certain amount of skepticism, we may not come into an encounter with a medical center or a cancer center with the same amount of skepticism. I think that trust is really sacred, and I would hate for that to be manipulated.”
Michael Schulson is an American freelance writer covering science, religion, technology, and ethics. His work has been published by Pacific Standard magazine, Aeon, New York magazine, and The Washington Post, among other outlets, and he writes the Matters of Fact and Tracker columns for Undark.
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I believe there is also something more insidious going on and it is the medical industry’s desire to turn every single person into a “patient” — we must be sick, sick but don’t know it (this is an expanding category that now includes the those who are pre-symptomatic, pre-clinical, or possessing of some marker), or soon to be sick. The medical industry would love to have 100% of the economy and to have you spend all your time at the medical center and never leave! Hiding behind a concern for “health” rings hollow. Perhaps individual health care workers have people’s best interests in mind – but they are too inside the bubble to see how perverse the system is becoming. No one seems to care what this relentless marketing is doing to our sense of self, our images of ourselves as strong, resilient – and yes mostly healthy… with other interests and ways to spend our precious time and resources besides sitting in waiting rooms.