Aug 31, 2017
By Elaine Schattner, MD, FACP
Journalism is a field undergoing rapid transformation. In 2016, nearly two-thirds of U.S. adults received news by social media. The Pew Research Center reported that the proportion and number of men and women seeking news on Reddit, Facebook, Twitter, Instagram, and YouTube has been climbing since 2013. Meanwhile, traditional newspapers contend with falling print circulation, compete for online traffic, and drop staff. The number of U.S. newsroom employees fell steadily after 2006, from 55,000 to fewer than 33,000 jobs.
Medical news presents a unique set of challenges, both for journalists and consumers. On the production side, reporters and editors aim to translate doctors’ jargon-loaded updates into digestible, truthful, and appealing bits of information—stories—that resonate with a lay audience. The work is no small task, given the complexity and pace of scientific and clinical research. On the receiving end, patients or caregivers might read, watch, listen, or skim a feed, consciously or unconsciously taking notes. No matter what the source, an article might influence an individual’s thinking about a personal medical decision. On a larger scale, medical journalism can sway policy makers.
The quality and accuracy of news has the potential to alter health outcomes. Put simply, the public depends on reliable news to support everyday medical choices and, occasionally, inform major decisions. When journalists get stories right, they help people to make reasoned choices and ask better questions of their physicians. Conversely, when reporters make errors or editors publish misleading headlines, people with medical conditions and other consumers of news may be harmed.
Balancing Skepticism and Hype
A 2016 CBS Evening News story, “Promising Brain Cancer Trial Given Breakthrough Status by FDA,” offers an instructive example of how news can affect patients’ thinking, hopefulness, and care. Scott Pelley, said by CBS on its website to be “one of the most experienced reporters in broadcast journalism,” anchors the show. He stands upright, against a backdrop of laboratory research images; he speaks with a clear and authoritative voice: “We hope one day to lead the broadcast with a cure for cancer, but tonight, we might have the next best thing.”
“The treatment is audacious, using poliovirus to kill glioblastoma, a vicious brain cancer that can kill in a matter of months,” Pelley states. The program cuts to a young woman who, as told, was the first patient with brain cancer to volunteer in the clinical trial of an experimental treatment at Duke University. The newscaster reviews her case quickly, as a doctor might on rounds. In 2011, a 20-year-old nursing student experienced headaches; doctors found a brain tumor “the size of a tennis ball” and removed 98% of it in surgery; in 2012, the patient had recurrent glioblastoma. 60 Minutes first reported on the experimental brain cancer treatment in March 2015.
“Something unimaginable happened,” Pelley says in the 2016 segment. Her tumor “shrank for 21 months, until it was gone.” He shows the patient’s MRI to television viewers and explains that it no longer reveals a brain tumor. She and at least two other participants in the phase I trial were doing well and in complete remission for over 3 years, Pelley reported.
Critiques of the 60 Minutes and CBS Evening News coverage of the polio-derived brain cancer vaccine appeared at Forbes.com (where I am a contributor) and HealthNewsReview.org, a health journalism watchdog site. Criticisms included failure of Pelley’s team to spell out alternative standard and experimental treatments for glioblastoma, no mention of costs, a heavy-weighting of views put forth by those involved with the trial at Duke, a lack of emphasis on the toxicity and deaths experienced by most of the research participants, and the use of the term breakthrough. The harshest piece appeared in MedPage Today: “Brain Cancer: Did ‘60 Minutes’ Report Raise False Hope?”
The original 60 Minutes feature led to a slew of phone calls to the brain cancer team at Duke University, according to the MedPage story. A later piece published by The Hill, “‘60 Minutes’: FDA Fast Tracks Cancer Treatment Using Polio Virus,” reflects the perception that television coverage accelerated the experimental trial and vaccine treatment. As told in the later CBS Evening News segment, the investigational agent is being developed by a company based at Duke and involves a scientist interviewed on the program.
The clip illustrates the challenges of discerning cancer progress from hype and news from advertisements. When I rewatched this episode on my personal computer in February 2017, an advertisement for a cancer treatment center kicked in. Yet I found the story compelling and valuable, overall; I wanted to know more about the brain cancer vaccine being tested at Duke University, a major academic medical center. Moreover, if I knew an otherwise healthy person with recurrent glioblastoma, I would want them to be aware of this promising treatment, in case they were seeking experimental options. A possible downside of this kind of story is that patients might have their hopes raised about entering the trial, only to find out that they are ineligible. On the plus side, for journalists to provide well-researched stories like this about the vaccine for glioblastoma, hearing of progress, however preliminary and carefully worded, might be comforting to people who have lost loved ones to the condition.
One reason the CBS story drew some flak may be that it begins with the term promising in the headline. That word—like breakthrough or miracle in a story having to do with cancer—causes journalists, and doctors, to bristle. Some teachers of health care journalism advise these hopeful words be avoided, for similar reasons that oncologists instruct younger doctors not to tell a patient they have been cured [of their cancer], but rather to say they are in remission. The problem with using such optimistic terms is they fail to prime the reader, or patient, for disappointment.
A research letter published in JAMA Oncology, “The Use of Superlatives in Cancer Research,” suggests that excessively positive language appears with undue frequency in journalism about cancer. The article, based on a Google search of terms in news published over 5 days in late June 2015, generated a blitz of coverage in late October 2015, when the paper appeared online. The story resonated, at least among journalists. “Half of the cancer drugs journalists called ‘miracles’ and ‘cures’ were not approved by the FDA,” said Vox.com. In a syndicated piece Reuters stated that “glowing terms are often used for new cancer drugs in health news.” “If A New Cancer Drug Is Hailed As A Breakthrough, Odds Are It’s Not,” stated NPR Health. “‘Revolutionary.’ ‘Game changer.’ ‘Miracle.’ How much are we hyping unproven cancer drugs?” asked The Washington Post. A March 2017 STAT News opinion by two oncology physicians, one of whom is the corresponding author of the original piece, reviews the JAMA Oncology report on superlative language. That column, “Few People Actually Benefit From ‘Breakthrough’ Cancer Immunotherapy,” refers to “an ocean of hype” and links to another negative report.
The message is clear: do not believe promising headlines about oncology drugs. But what if scientific and clinical advances have led to considerable gains for people with cancer? If progress against disease is real, as it may or may not be, a question for journalists is whether skepticism might be flipped: perhaps the current truth is not so bleak.
Failing to Report Progress that is Slow, Incremental, and Imperfect
Between 1991 and 2014, the death rate from cancer fell by 25% in the United States. This impressive figure headlined a report by the American Cancer Society (ACS), “Cancer Statistics, 2017,” published on January 5, 2017. In compiling this update, epidemiologists and statisticians drew on mortality data gathered by the National Center for Health Statistics. They also reviewed cancer incidence and survival data from the Surveillance, Epidemiology, and End Results (SEER) Program, the National Program of Cancer Registries, and the North American Association of Central Cancer Registries.
Yet a casual survey of my acquaintances who are not oncologists confirmed that some educated people, individuals who read print newspapers and listen to National Public Radio, for instance, remained completely unaware of this favorable trend. A recent search of the New York Times website using terms like “cancer deaths” and “American Cancer Society” finds no mention of the January 2017 ACS report on the 25% decline in U.S. cancer mortality. The Wall Street Journal also appears to have passed on covering this story.
Several national news outlets did pick up the ACS report. TIME.com published a short piece, “Here’s Why the Cancer Death Rate Has Plummeted.” CNN.com ran a story, “US Cancer Deaths Down 25% Since 1991, Report States,” but did not produce searchable video or television coverage. Like CNN, NBC News posted an article on its website, but does not appear to have supported it with video or television footage. USA TODAY did not cover the analysis directly, but posted a 47-second video, “2017 Is Looking Healthier: Cancer Death Rate Drops a Fourth Since ‘91.” A caption at USAToday.com attributes the video to Newsy NewsLook, a company that provides a “premium video solution that increases views and revenue for Publishers and Creators.” In other words, the USA TODAY story on the cancer decline was produced by a commercial video manufacturer.
Focus on Disparities (Where Information Might Help Outcomes)
The fact that cancer death rates have been declining, albeit unevenly, surfaced in a January 2017 JAMA analysis. That paper confirms the drop in overall U.S. mortality from cancer after 1980 and highlights disparities. Cancer pockets—marked by a high incidence or death rate from malignancy—exist in broad U.S. geographic areas and small communities. Lung cancer disproportionately affects and kills people in Appalachia, for instance. A high death rate from breast cancer occurs along the lower Mississippi and southern belt states. Clusters, or hot spots, of kidney cancer appear in areas along the Mississippi and in North and South Dakota. Stage at diagnosis and cancer death rates vary among counties within states.
These regional differences in U.S. cancer outcomes support the need for improved education and journalism about health. In 2015, Newsweek dedicated an entire issue to cancer. In a long-form feature, journalist Jessica Wapner reveals the outlook for patients with cancer in central Appalachia. She visited a region of eastern Kentucky where prevalent poverty and low education levels contribute to cancer’s high toll. People in the area suffer health effects from heavy smoking and excess particulate matter in air. “A long history of poverty and disease in the region has led to a sense of resignation, a fatalistic belief about the inevitability of cancer and the death it brings,” Wapner wrote. “Many people who are diagnosed refuse treatment because they don’t see the point of going through the pain.”
In the context of recent data about the declining U.S. cancer death rate, the Newsweek story points to the potential role of news to inform people about progress and nudge them toward better outcomes. Careful journalism might disrupt a fatalistic cycle of disbelief in cancer treatment’s value that leads to late presentation of patients with cancer to physicians, lesser outcomes, and more deaths. Consider the plight of a woman or man living in rural Kentucky with a persistent cough and weight loss, symptoms of a possible lung cancer, today. Just knowing that cancer deaths in the U.S. population are down, by as much as 25% in recent years, might prompt some individuals to visit the doctor rather than ignore early signs of disease.
Despite Progress, a Dim and Confusing Picture
The recent 25% decline in U.S. cancer deaths—what might be deemed as evidence-based news about cancer that is not anecdotal—reflects progress. Yet it got little attention. Of course, with so many ongoing political changes in January 2017, including the possible repeal of the Affordable Care Act and the effect of the travel ban on doctors, the omission of cancer news from headlines might be understood. When newsrooms are strapped for reporters and editors need to choose stories that draw clicks, careful reporting about cancer research, drugs, and clinical developments might be put aside.
Yet reports about cancer appear constantly and often cast a negative slant. Many recent articles focus on the exorbitant costs of cancer medications. Some stories feed on anger over high drug prices, raise or address economic issues, and mix with political news. Although reports on treatment costs might be set apart from reports on effectiveness, the issues often get conflated, in part because economists and health policy experts discuss pricing models that depend on how well the drugs reportedly work.
Since January 2017, overlapping articles have emphasized the ineffectiveness of oncology treatments. One example, “Dozens of New Cancer Drugs Do Little to Improve Survival, Frustrating Patients,” appeared in Kaiser Health News on February 9, 2017. The piece, also available in Spanish (Nuevas drogas contra el cáncer, ¿ayudan a vivir más?), draws on a lecture on “Unintended Consequences of Expensive Cancer Therapeutics” published in 2014 in JAMA Otolaryngology–Head & Neck Surgery and a few recent papers finding marginal, if any, benefit of new oncology drugs. The story leads with the picture of a woman whose breast cancer progressed through multiple treatments, causing pain. It refers to high prices, averaging $171,000 per year, and relies heavily on negative quotes offered by critics of precision oncology. The same article ran in USA TODAY with an abbreviated headline, “Dozens of New Cancer Drugs Do Little to Improve Survival,” and on CNN.com, “Amid Flurry of New Cancer Drugs, How Many Offer Real Benefits?”
In addition to dismissing the value of cancer drugs, recent health news casts doubt on the reliability of medical research. In January 2017, the BBC highlighted the reproducibility crisis with the headline “Most Scientists ‘Can’t Replicate Studies by Their Peers.’” The journal Nature covers the Reproducibility Initiative, a project funded by the Laura and John Arnold Foundation that aims to replicate key findings in basic cancer research. In early March 2017, NPR Health ran a related piece, “Reports Of Medical Breakthroughs Often Don’t Prove Out.”
The triple takeaway might be that new cancer drugs rarely work, cost lots, and that reports of progress cannot be trusted. Yet the well-documented pattern of reduced U.S. cancer mortality supports that modern oncologists are doing something right overall. Perhaps the day-to-day medical news, with a focus on narrative and twists, and only occasional details about treatments, fails to capture the big picture about cancer and incremental progress.
Loss of Information Gatekeepers
Thirty years ago, when I graduated from medical school, someone wanting to distribute a factual update, opinion, or analysis generally needed access to a publisher with printing equipment or a company with radio or TV broadcasting equipment. This is no longer the case. Today a doctor, high school student, refugee, patient with cancer, teacher, celebrity—anyone—can write a few lines, take a photo, or film something and post it to the web.
Social media posts, along with other sources of cancer-related information—ranging from direct-to-consumer advertisements sponsored by pharmaceutical companies, to articles put forth by cancer centers on fancy websites, to blog posts authored by individual clinicians—contribute to what might be described as an online free-for-all regarding cancer facts, treatments, and opinions. The expanding volume of stories and data about cancer offers patients and doctors an unprecedented amount of material to sort through. Distilling what is true, relevant, and helpful to an individual patient may be more difficult than ever before.
The disruptive and potentially helpful impact of Twitter, a social media platform, is hard to gauge in terms of clinical care and cancer outcomes. Although the numbers of oncologists, patients with cancer, advocates, researchers, and communications specialists representing pharmaceutical companies, hospitals, and pathology laboratories using social media are rising, the consequences of all this activity remain unclear. Preliminary reports about Twitter and health care cannot be generalized because they draw on data from the platform’s users.
Twitter does facilitate rapid transmission of health news. This could be most helpful during a public health emergency. How it might help patients with cancer and their caregivers is by directing those with a condition or interest, like sarcoma, to relevant news such as the U.S. Food and Drug Administration approval of a new drug, clinical trials, conferences, and websites providing vetted information.
A Perscription for Cancer News
One might consider if and why medical journalism matters. Although a physician or patient might enjoy reading a feature on immune therapy or listening to a podcast on ethical or technical aspects of genetic testing, few individuals would make treatment choices based on what they’ve read in the Atlantic or seen on CNN. Yet exposure to news—what journalists are writing in papers and magazines and saying on radio, TV, and social media—can influence a person’s background view, so that when they enter a physician’s office, they know what questions to ask; a patient might be more wary of an intervention or more willing to accept it. Health news affects whether a person enters a doctor’s office in the first place.
I would suggest that good-quality health journalism might be more needed than ever before. As the number of competing online sources of information expands, and patients know their personal doctors less well, the potential consequences of news about oncology, and how that news is steered by editors and social media, will affect cancer patients’ decisions, experiences, and outcomes.
Despite progress, negative stories constitute much of what people hear about cancer: patients suffer; many die after treatments fail; medications cost too much and can cause bankruptcy; survivors endure long-term side effects and chronic health problems; researchers fail to reproduce findings; bad oncologists carry out fraudulent billing. News of treatment toxicity, such as recent reports about cardiac effects of oncology drugs, might scare a patient, so that they decline treatment that is likely to help. Reports on chemobrain, recently substantiated, could dissuade anyone from taking the medicines an oncologist recommends. Of course, it is every person’s right to have this kind of information: the good, the bad, and the mixed results.
News, presented in a balanced way, could help guide patients and caregivers about the risks and benefits of treatment options. Journalism can inform patients’ decisions about whether to try medicines, whether and when to accept consultation from a palliative care specialist, or choose hospice care. Although premature reports of groundbreaking findings in mice or breakthroughs in the laboratory can mislead, the public deserves to know about advances. The truth includes progress.
Producing balanced stories that convey information about progress against cancer, without hype, tasks journalists. Transparency will serve them and their audience: physicians and scientists need be upfront about conflicts of interest and funding, recognize and indicate the limits of conclusions from any study, and be open to correction. What journalists can do, although it is not easy, is to seek varied perspectives. Incorporating viewpoints of scientists, physicians, patients, and others, including some who are not directly involved in a story, should add depth and generally improve coverage.
As newsrooms shrink and reporters work at a quicker pace, the challenge of producing balanced stories that convey information about real progress against cancer, without hype, may push editors away from the subject. Unless the data for a treatment or experimental results are so extraordinary that they astonish seasoned oncologists, so much that they use terms like breakthrough or possible cure regarding previously hopeless tumors, journalists may think it wise to play it safe, skip coverage, and report on something else. The reality of incremental progress is unfortunately dull, except, of course, to the patients who experience these advances, their loved ones, and providers of care, including physicians who see them do well.
Some journalists might consider, as I have, that detailed information about cancer treatments belongs in doctors’ offices and journals and not in the news. However, if people remain uninformed of trends, they may remain ignorant of the big picture. Even doctors who are not specialists may not be aware of some advances that have occurred in the past decade against metastatic lung cancer, melanoma, and a growing list of previously hopeless tumors. There is a need for good-quality news about cancer, especially in communities in which cancer mortality remains disproportionately high.
There is no easy prescription for distilling truth in oncology news. But I am hopeful, as journalists grapple with a changing pace of work and staff and as doctors contend with a changing pace of practice, that better education—of physicians and the public—about cancer, and in basic math, statistics, biology, and other fields relevant to oncology, will prove helpful. For journalists and for doctors, knowing how to interpret and convey fluid information is crucial for public health.