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Friday, July 26, 2024

That Glowing Patient Testimonial May Not Be What It Seems

In 2016, Claire Cunningham, a breast cancer patient who owned a flooring business in northern England, heard about the Hallwang Clinic, a private alternative treatment center deep in southern Germany’s Black Forest. One of the factors that influenced her decision to seek care there was a post on the clinic’s Facebook page and website touting “the amazing results achieved” for patient Pauline Gahan, a British woman whose anecdote Claire felt her own circumstances resembled. Claire ended up spending some $368,000 at the clinic, which uses treatments that are unorthodox, unproven, and exorbitantly expensive. Yet Claire later provided the German facility with her own photo testimonial for its Facebook and web pages. It reads, in part, “MIRACLES DO HAPPEN!”

By early 2018, Claire’s condition had worsened. Eventually, Claire insisted that, despite having participated in the clinic’s promotional efforts, she would not return there, even if she could afford it, and that she had given the testimonial at a moment when she was vulnerable physically and financially. Like the testimonial from Pauline, who died in 2017, Claire’s, too, has outlived its subject; she died in 2019.

By any measure, this pattern of solicitation is egregious. Yet it’s become commonplace at health businesses in many countries, seen as a necessary evil that reflects marketplace realities.

“Today is the third day, and I have no pain,” says a hysterectomy patient in India in a recent video posted by the surgical practice.

“Our son is sleeping through the night now,” says the mother of a pediatric patient in a video shared by a UK sleep specialist.

“I saw all the good reviews that he had online,” says a bariatric sleeve patient of her surgeon in Mexico, in a video filmed at her bedside. “I’m really glad I chose him.”

These sorts of advertisements are a scourge in the US too. In 2012 a Pennsylvania chiropractor ran an advertisement containing patients’ enthusiastic reviews of an unproven technique known as galvanic skin measurement. The advertisement claimed the practitioner had a “90% success rate.” Among the testimonials was one from a breast cancer patient who said that following the treatment protocol caused her cancer to shrink. After receiving a complaint, the Pennsylvania State Board of Chiropractic determined that the ad was misleading—chiropractors can’t dole out purported cancer treatments. But it wasn’t until 2019, after a two-year board investigation and subsequent proceedings in state court, that the practitioner’s license suspension was upheld, in part for creating “false or unjustified expectations of beneficial treatment for a successful result,” according to court documents.

Legal efforts to police patient testimonials on a case-by-case basis—which focus on ensuring truth in advertising—are both insufficient and misplaced. That’s because the underlying problem is less about vetting individual stories than about grappling with two broader ethical issues. The first: When a health practitioner asks a patient to provide a testimonial, it not only exacerbates the inherent imbalance of a provider-patient relationship, it also risks misleading prospective patients unaware of the circumstances through which a given testimonial came to be. For example, an article in the journal Plastic and Reconstructive Surgery advises doctors to ask an “exuberant” patient for a review “when the patient is at peak happiness (approximately 6 weeks)” after the procedure, and acknowledges that “some practitioners even admit to paying for reviews.” Similarly, RealSelf, a patient-research and review platform for cosmetic procedures, hosts trainings for practitioners to guide them in best practices for amassing positive patient reviews, such as to avoid asking when the patient is headed out the door.

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Second, existing regulation structures seem to elide the underlying dynamics of what it means to seek health treatment: that when touted by a doctor, a given testimonial can be harmful even—and perhaps especially—if it truthfully represents a former patient’s own positive experience, for the simple fact that patient experiences often vary more than a collection of cherry-picked attestations suggest.

We’re used to being asked for reviews—customer-service calls, hotel stays, and Uber rides prompt us to rate them or leave a comment. And testimonials work. Patients, practitioners, and experts who study their relationships agree that there’s something uniquely compelling about a patient sharing a personal story; researchers have found that positive testimonials have influenced patients seeking treatment for post-traumatic stress disorder, knee-replacement surgery, or Invisalign. Some major medical institutions, such as M. D. Anderson Cancer Center in Houston, have teams and substantial budgets dedicated to soliciting and producing patient success stories. And then there are the third-party platforms, like Zocdoc, Vitals.com, or even Yelp, where patients can log reviews and ratings of their experiences.

But a doctor has a different set of ethical responsibilities than, say, a restaurant manager, Nancy Berlinger, a research scholar at the Hastings Center, a bioethics research institute in Garrison, New York, tells me. “Health care is a business. It's not only a business,” she says. “Health care professionals have duties that are built into their professional role, they take professional oaths they agree to abide by—to avoid harm to patients, to put patients first, to protect the vulnerable, and to model good behavior concerning health.”

Several overlapping sets of rules dictate how health practitioners may market their services in the US, according to Patrick Herron, a bioethicist and associate professor at Albert Einstein College of Medicine in New York City. The system can be confusing for providers and results in enforcement that can feel scattershot and slow. Some national professional associations lay out standards for advertising—such as refraining from marketing that is “false, misleading, fraudulent, extravagant, or deceptive”—that members must meet to remain in good standing. A few of these acknowledge that soliciting testimonials risks exploiting current patients, and a handful, including the American Psychological Association, prohibit them altogether.

Even an explicit ban issued by a professional group, though, might not be enough to curb the practice among its members. The Canadian Psychological Association prohibits the use of client testimonials in promotional materials. But a study published in 2018 found that around 4 percent of clinicians’ websites featured them anyway.

Matthew Wynia, now director of the Center for Bioethics and Humanities at University of Colorado, previously led the Institute for Ethics at the American Medical Association, the major US physician society. He thinks there might be a middle ground—that patient testimonials, which have real value, can be solicited ethically by some practitioners if they are treated as gifts, and the relevant rules are applied. Professional standards, he says, prohibit doctors from soliciting a gift—say, a donation to fund new research—while a patient is ill. If a patient who has recovered asks about making a financial contribution, Wynia tells me, “it's perfectly fair and ethical to talk to that person about how they can make a donation to the institution that would support your research.”

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Still, he says, a doctor seeking any gift must always consider: “Is the patient really in a vulnerable position where they don't feel comfortable saying no? Or do they have the impression, whether warranted or not, that their care is going to be affected?”

Even if health providers refrain from directly asking patients for blurbs, as long as they are permitted to advertise themselves by curating a selection of individual patient outcomes, they risk misleading prospective patients with a disingenuous picture of results—what Wynia calls “bluffing, puffing, and spinning.”

Some providers crib reviews from sites like Zocdoc and tout them in marketing material, sometimes with identifying details attached. Zocdoc, a New York firm founded in 2007, is focused on vetting the authenticity of its reviewers and on preventing instances of fraud directly on its platform. Once they’re online, though, doctors can funnel the reviews, filtered by star rating so the most glowing ones are highlighted, directly to practice websites.

And then there’s the issue of incentives. In one of its training videos, an employee at RealSelf, the cosmetic procedure platform, notes that FTC rules discourage practitioners from incentivizing their own patients to write reviews, but steers them to a workaround: “It is not against the rules for RealSelf to offer incentives to your patients to write a review, and you can leverage our incentives,” like entrance in a monthly $500 sweepstakes, “in place of your own.” Josh King, the company’s general counsel, adds: “It's not that doctors absolutely can't incentivize reviews. It's just that your typical plastic surgery practice doesn't have the know-how, tools, or consumer volume to offer incentives in a compliant way, and may well get themselves in trouble if they try.”

Doctors and other practitioners shouldn’t be bluffing, puffing, or spinning—or anticipating the perfect moment to ask a recovering patient for a favor so as to reel in the next one. Nor should they be authorizing review companies to dangle prizes to their patients. Rather than a patchwork system of standards and statutes, or engaging in guesswork about the timing of gifts, a blanket ban on patient testimonials and using patient statements in marketing would protect current and future patients while allowing practitioners to focus on care.

There are other ways to advertise medical services. “The public has a right and a vested interest in knowing if a hospital, clinic, or medical practice is offering a type of service,” such as gastric-bypass surgery, says Albert Einstein’s Herron.“You can talk broadly about ‘this is something we’re providing, and if you’re interested, please contact us.’ Because it’s more about the institution, not about an individual.”

Or there’s the strategy that Paul Hughes, a UK psychotherapist with offices in Reading, Oxford, and London, uses. He has a page on his practice website titled “Why no testimonials? A page on ethics.” (Websites smattered with testimonial videos are common among UK therapists.) Testimonials represent a breach of confidentiality, put the patient in a difficult position, and represent only a snapshot in time, he writes. He includes some excerpts from his Google review page and a link to his full listing. “We are there to serve the client's interests,” he tells me. “They're not there to serve ours.”


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