Hospitals slammed for ventures that exploit patients and violate their privacy
Big hospitals can’t exploit patients and violate their privacy by throwing open their facilities to Hollywood for television shows that plump institutions’ reputations. And academic medical centers need to think twice before letting their leaders strike cozy deals to enrich a choice few insiders by hawking important diagnostic information collected with best intentions by medical staff from patients for decades.
The roster of hospitals dealing with black-eyes from recent negative news stories about their activities includes well-regarded institutions in Boston and New York — Boston Medical Center, Brigham and Women’s Hospital, Massachusetts General Hospital, and Memorial Sloan-Kettering Cancer Center.
Federal regulators busted the Boston hospitals with fines settled for just under $1 million for “inviting film crews on premises to film an ABC television network documentary series, without first obtaining authorization from patients,” reported the U.S. Health and Human Services’ department’s Office of Civil Rights.
The hospitals defended their cooperation with ABC for its show, “Save My Life: Boston Trauma,” saying the series offered valuable insights to the public about emergency care and that some patients involved were pleased with how the programming came out.
HHS disagreed. “Patients in hospitals expect to encounter doctors and nurses when getting treatment, not film crews recording them at their most private and vulnerable moments,” Roger Severino, director of the civil rights office, said in a statement. “Hospitals must get authorization from patients before allowing strangers to have access to patients and their medical information.”
Media experts noted that careful, bona fide medical journalism can be revealing and important to the public, though the line has thinned in broadcasting between serious news reporting and ratings-driving, celebrity-focused reality programming.
HHS previously had warned hospitals that it would set a high bar for them in protecting patients from exploitation and privacy violations like those for which its civil rights office had fined New York-Presbyterian Hospital $2.2 million in 2016. That’s when the Manhattan hospital worked with Mehmet Oz, aka Dr. Oz, as the medical celebrity host and headliner of the “NY Med” reality TV program. Watchdogs found that show “egregious” in filming a dying patient and another in distress — in both instances without patient or loved one’s consent.
As with the Boston hospitals, New York-Presbyterian, in its settlement, denied wrongdoing and argued that the multi-part, ratings-drawing show provided important information about the work of doctors and hospitals to the public. A publicist for the hospital, in tone-deaf fashion, also had boasted to a trade publication about the reputation- and profit-enhancing value from its depiction in a reality show, particularly one with a celebrity doc like Oz.
Cozy cancer center deal blows up
Concerns about big money and patients care also dogged Sloan-Kettering, rocked by a second scandal in as many weeks. The respected cancer center was thrown into turmoil by disclosures about an agreement struck by institutional leaders and Paige.AI, one of many high-tech start-ups seeking to apply artificial intelligence to health care.
The company won an unusual boost for itself by striking, an exclusive deal to use the cancer center’s vast archive of 25 million patient tissue slides, along with decades of work by its world-renowned pathologists,” reported ProPublica, the Pulitzer Prize-winning investigative site, and the New York Times. To be clear, the deal involves sharing of imagery, data, and analyses, not tissue samples themselves, the reporters have emphasized. They also noted that:
Memorial Sloan Kettering holds an equity stake in Paige.AI, as does a member of the cancer center’s executive board, the chairman of its pathology department and the head of one of its research laboratories. Three other board members are investors.
There are problems with that, ProPublica and the New York Times reported:
Hospital pathologists have strongly objected to the Paige.AI deal, saying it is unfair that the founders received equity stakes in a company that relies on the pathologists’ expertise and work amassed over 60 years. They also questioned the use of patients’ data — even if it is anonymous — without their knowledge in a profit-driven venture. In addition, experts in nonprofit law and corporate governance have questioned whether Memorial Sloan Kettering, one of the nation’s leading cancer centers, complied with federal and state law governing nonprofits when it set up the deal. The experts pointed out that charitable institutions like Memorial Sloan Kettering must show that they didn’t provide assets to insiders for less than the fair market value. … The decision [in this deal] to license images of the patients’ tissue slides to a for-profit company also highlights the broader debate over the use of personal medical data, ranging from genetic information to, in this case, images of a person’s cells, for research and commercial purposes.
In my practice, I see the harms that patients suffer while seeking medical services, especially in hospitals. They’re part and parcel of the destruction and death inflicted on too many patients due to medical errors. Such medical injuries and mistakes, many preventable, claim the lives of roughly 685 Americans per day — more people than die of respiratory disease, accidents, stroke and Alzheimer’s. The pricey suits who dominate and run giant, profitable hospitals would well serve their institutions, medical colleagues, and most especially patients, if they kept a laser-focus on caring for the sick and injured, instead of campaigning to put up bigger, shinier buildings filled with expensive equipment, and expanding into any endeavor that will turn even a few nickels and dimes more.
Patient data already is increasing in value, particularly if researchers can convert it or information from it into beneficial and lucrative drugs and treatments. As technology advances increase opportunities to apply and profit from this material, hospitals and doctors will confront tough ethical and practical issues — not the least of which will be whether, as caregivers, they provided patients with informed consent. That’s a fundamental right for patients to get all the important facts to make an intelligent decision about what treatment to have and where to get it.
It also includes knowing what happens to tissues, fluids, and information taken or derived from them, for example, as occurs often in cancer care. Will these be used anonymously, with patients’ privacy protected? Further, will medical staff and institutions share with patients any money made from products or therapies developed from their highly personal materials, including intelligence about their care?
We’ve entered brave new worlds in medicine, and they’re fraught with practical, financial, and ethical concerns. Hospitals — where leaders fail to disclose their conflicts of interest (including Big Pharma payments) or cut deals that put their own interests at the fore or run roughshod over patients’ privacy — send significant signals to the public: Why in the world would be put our lives, health, trust, and money anywhere near such places?