The following post is by Mary Chris Jaklevic, a freelance health reporter who joined our review team in April 2016. This is her first contribution to the blog. She tweets as @mcjaklevic
Anecdotes are powerful tools for engaging an audience. That’s why journalists are trained to include the stories of real people — not just experts — in their coverage.
But one person’s narrative can be misleading if it doesn’t reflect the bigger picture. That’s why it pays to be wary of health care news coverage that focuses on a single patient; it might not reflect the typical patient experience.
That caution especially applies to emerging therapies and clinical trials, when it’s difficult for journalists to track down patient sources independently. Instead, a research facility’s public relations staff often selects patients to be interviewed. It’s no surprise that PR folks offer up subjects whose stories put a positive spin on the research.
Offer of patient interview raises red flags
One example is a recent pitch from UCLA Health in conjunction with a news release touting a safety trial of a prostate cancer treatment that uses magnetic resonance imaging (MRI) to guide laser heat, known as focal laser ablation. A member of UCLA’s media relations team sent this note to journalists:
I have a patient available. Chris Pook, the founder of the Long Beach Gran(d) Prix, was in our study and his cancer was destroyed while maintaining the integrity of the prostate.
Pook is, in fact, a well-known motorsports executive in Southern California and presumably an articulate guy. He’d probably make a compelling interview.
But UCLA’s tempting offer came with some obvious red flags. First, the study, published in the Journal of Urology, was a phase 1 clinical trial, which means it was designed to determine safety, not efficacy. It included only six months of follow-up. Moreover, there were just eight men in the trial, and the majority weren’t cured.
A member of our review team, Richard M. Hoffman, MD, MPH, a professor and director of internal medicine at the University of Iowa Carver College of Medicine and the Iowa City VA Medical Center, expressed some concerns about the findings. His areas of expertise include prostate cancer screening and treatment outcomes.
‘These men were not cured of their cancer’
Hoffman wrote: “The big unresolved question is indeed whether this procedure will be able to cure cancers. To me, the results from the six-month follow-up biopsies were disconcerting. Three of the eight subjects (nearly 40 percent) still had cancer cells present at the treatment site. Six of eight subjects (75 percent!) had tumor cells found in tissue adjacent to the treatment site (aka margins), and one had tumor at a biopsy site remote from the treatment site. These men were not cured of their cancer.“
It’s unclear why so many men still had evidence of cancer at follow-up. In the study, researchers said they were “conservative” in deploying the laser given that their primary concern was testing for safety. But Hoffman said an MRI machine “cannot definitively identify all tumor sites, which means that there can be false negatives in diagnosing cancers and—as shown even in the small number of subjects in this trial—there will be tumors that will be missed or incompletely treated with the new laser technology.” This raises concerns that patients may need repeated treatments, he said.
In any case, large-scale clinical trials are required to determine whether this treatment is safe and effective. So at this point it’s tough to see how one patient whose cancer was presumably “destroyed” could be representative of anything.
Still, those facts didn’t stop UCLA from touting benefits of the procedure in its news release with the headline: “Laser ablation becomes increasingly viable treatment for prostate cancer.” Likewise the lead reads: “Prostate cancer patients may soon have a new option to treat their disease.”
These statements are far afield from what the study actually says, which is that no serious adverse effects were detected six months following the procedure but further study is needed to determine efficacy, patient satisfaction, safety for different types of patients, and cost-effectiveness.
Hoffman worries that unproven procedures like this one will be aggressively marketed to men with low-risk cancers who would be better off with active surveillance rather than treatment.
How should journalists approach offers of patient access?
We may never know the particulars of Mr. Pook’s case, since no journalists elected to interview Mr. Pook about the therapy, according to a UCLA spokesperson. In fact, this study received almost no consumer news coverage that we could find, possibly because journalists recognized the findings as too preliminary to warrant a story.
Still, PR departments routinely pitch patients with rosy outcomes to journalists in the hope that a positive story will ensue, and they are often rewarded.
So should journalists reject patient interviews for stories about investigational treatments?
Not necessarily. Sometimes journalists do an exemplary job of painting a complete portrait of a treatment with only one patient. Take a 2015 Philadelphia Inquirer story about a patient undergoing immunotherapy for leukemia. Even though the patient profiled in the story has benefited remarkably from the treatment, he details terrifying life-threatening side effects and laments that most patients, unlike him, don’t seem to respond to the therapy. Reviewers wrote that the anecdote wasn’t “the cheerleading-type narrative that we often see with single-patient-focused stories. Overall the coverage provided a very human story interwoven with a bit of medical science.”
Lisa Zamosky, a longtime health care journalist who’s written a tip sheet on recruiting patient and consumer sources for the Association of Health Care Journalists, says she is “always a little more suspicious” of sources fed to her by PR departments. She said journalists need to be extra cautious, do their homework, and talk to outside experts.
In the UCLA prostate case, she said, it would be reasonable to ask to interview more than one patient, including one whose cancer was not eradicated, and to ask the patient whether he is aware of other outcomes. Even patients with unusually positive stories might yield telling answers, she says.
Humanizing stories, she said, is “actually a very important part of the job. It’s explaining not just what the story is but how this is important to the reader.”