Problematic PR releases: As evidence lags on proton therapy, hospitals lure patients with anecdotes and high-tech appeals

By | October 21, 2018

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Mary Chris Jaklevic is a reporter-editor at HealthNewsReview.org. She tweets as @mcjaklevic.

A recent news release from Michigan’s Beaumont Medical Center shared the story of an 8-year-old girl with a brain tumor who traveled from Hawaii to be treated at the hospital’s proton therapy center.

Its heart-warming details include how the girl bonded with her medical team, gave them candy from her home state, and hopped onto a treatment table “so high-tech, it looks like something out of Star Wars.”

While some readers might find it inspiring that the girl and her family traveled 4,000 miles for treatment, others might ask: Where’s the data?

The news release claims the treatment is superior to standard x-ray (photon) therapy because it reduces radiation exposure, leading to fewer side effects and a reduced risk of secondary cancers. That might be an important benefit for patients like that girl.

But it didn’t mention the lack of robust evidence that proton therapy is safer and more effective, its significantly higher cost, or the fact that it has serious side effects.

Such imbalanced news releases have become commonplace as more and more hospitals sink capital in costly proton facilities, and they often spark superficial news coverage.

A news site echoed a Beaumont PR release touting “greater precision” from proton therapy.

In this case, the release was rewritten as a news story under the byline of a transportation and business reporter for the Ann Arbor (Mich.) News, without any additional reporting to fill in the missing details for readers. The story appeared on MLive.com, a news site owned by the media holding company Advance Publications, which also owns the paper.

Beaumont releases led to three superficial news stories

This is not the only problematic news release enticing patients to Beaumont’s $ 40 million proton therapy center, which opened last year. We found three others highlighting positive patient anecdotes, two of which led to boosterish one-sided news stories:

We’re happy for the optimistic prognoses reported in these news releases, and we can understand why some patients and their families might want to share stories about what they view as successful outcomes.

But when a hospital uses stories as a marketing tool, as these obviously do, it has an obligation to future patients to provide balanced information. Anecdotes are great for drawing readers in, but they often highlight best-case scenarios that may not be representative.

Hospitals don’t discuss the quality of evidence

While Beaumont’s patient-focused media strategy appears to be an extreme case, we routinely see hospital news releases that make grandiose safety and efficacy claims about proton therapy with no cautions about limited evidence and high costs.

For example, a release from New York’s Northwell Health called proton therapy “state-of-the-art” and “an important cancer fighting tool,” and University of Alabama release contained a quote calling proton therapy “a significant step forward in cancer treatment.”

The lack of robust evidence goes unacknowledged even in news releases that are supposed to explain scientific evidence. Take a Mayo Clinic release entitled Proton therapy may be better option for elderly patients with esophageal cancer, about a study showing lower rates of heart and lung problems in patients treated with proton therapy versus standard radiation.

The release didn’t explain that the study was observational and therefore did not prove that proton therapy led to better outcomes.

Mayo runs two proton therapy centers.

Comparative studies are lacking

So what does the evidence actually say?

Beaumont’s proton therapy building

Some research has suggested that proton therapy may be less toxic than x-ray radiation, since doctors can better direct radiation at the tumor. As a result, proton therapy is considered useful for eye cancers and solid tumors near vital organs such as the brain or spinal cord as well as for treating children, who are considered more vulnerable to tissue damage that could harm their development or lead to future cancers.

But that advantage has not been confirmed by randomized trials. Only one randomized trial has compared proton and x-ray radiation — for lung cancer — and it did not find a difference in toxicity.

It’s unclear when more comparative studies will be completed. A recent commentary in the Journal of Clinical Oncology said trials to test proton versus x-ray radiation for several cancers including breast and prostate are having trouble recruiting patients. It said insurers won’t pay the higher costs for proton therapy, which amounts to tens of thousands of dollars extra per patient.

“Some research has shown the benefits of proton therapy, but other studies have demonstrated expected and sometimes unexpected toxicities in certain cancers,” University of Pennsylvania associate professor Justin E. Bekelman, MD, a lead researcher in one of those ongoing trials, said in a news release. “That’s why these randomized trials are so important. We need the evidence from these trials to determine whether proton therapy is better than usual care at reducing side effects or extending survival.”

Despite the evidence gap, proton facilities proliferate

Lack of evidence hasn’t stood in the way of rampant adoption. When HealthNewsReview.org ran the first of many story and news release reviews about proton therapy in 2008, there were only five facilities operating in the U.S. A decade later, there are 28 up and running with 10 more on the way, according to the National Association for Proton Therapy.

By contrast, Canada has just one. Worldwide about a third of proton therapy facilities are in the U.S.

Although prices have reportedly come down somewhat for these facilities, the particle accelerators used in proton radiation are still considered the world’s most expensive medical devices. Critics say the high cost of building proton centers encourages overuse, increasing treatment costs for cancers without certainty of a benefit.

This cart-before-the-horse business model is not, of course, uncommon in U.S. health care. But in this case, it means that hospitals that have shelled out tens of millions for these machines are now stuck having to aggressively recruit patients for potentially overpriced procedures that aren’t backed by rigorous evidence.

Marketing treatments not endorsed by guidelines

The result is marketing spin built on emotional anecdotes and high-tech appeals.

The National Association for Proton Therapy lists 28 centers in operation and another 10 under construction in the U.S.

A recent analysis of online direct-to-consumer advertising found proton radiation is frequently advertised to treat diseases such as pancreatic, breast, and esophageal cancers — for which proton therapy is not endorsed by treatment guidelines.

It said ads often make emotional appeals using unsupported claims of better outcomes and fewer side effects.

We’ve spotted such claims in hospital advertorials, such as one about a doctor seeking proton therapy for prostate cancer and another about an 11-year-old treated for a brain tumor. Both were sponsored by Seattle Cancer Care Alliance Proton Therapy, an affiliate of Seattle Children’s Hospital and UW Medicine.

While those are ads, the same kinds of anecdotal marketing appeals are making their way into news releases and even news stories. Reader beware.

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