The quality of medical-scientific information is strained — and patients should know this, be warned, and watch for ways to protect themselves from bungled communication, bluster, hype, misinformation, and disinformation.
Although regular folks may have unprecedented access via the internet to resources on medical services and developments, a trio of recent news articles underscore the importance of the familiar warning Caveat emptor (buyer beware):
- California has found a narrow path between doctors’ free speech rights and reining in clinicians spreading false information about coronavirus vaccinations and treatments, the New York Times reported, adding that legislators granted new powers granted to regulators to deal with what became a significant problem during the pandemic.
- After analyzing more than 900,000 abstracts in the National Institutes of Health database from 1985 to 2020, researchers warned in an article published in the online network of the Journal of the American Medical Association that even serious scientists increasingly are pumping up the importance of their works, using terms of hype like novel, critical, sustainable, and actionable.
- An internist and health care administrator has written a poignant Op-Ed for the medical-scientific site Stat, cautioning patients and doctors that miscommunication, lack of candor, and a misplaced belief in overstated progress in cancer care is preventing those with terminal forms of the disease from grasping their mortality and the gravity of their condition.
California seeks to discipline MDs for mis- and disinformation
In the early days of the pandemic, the World Health Organization made a painful, prescient observation that this onrushing calamity would not only be grim but also historic because it would be require public health experts to not only combat a disease but also to battle “fake news, misinformation, and conspiracy theories [that] have become prevalent in the age of social media,” as a commentator wrote in the Lancet medical journal.
It is hard to fathom, though, that even the most insightful forecaster of that moment could have seen the role that doctors, many highly credentialed and serving in respected spots, would become such zealous, politicized disseminators and enablers of so much wrong, false, and deceptive health information.
Vaccines, which have radically improved global health by providing safe, effective ways to prevent an array of contagious illnesses, including the coronavirus, have become the target of much of the falsehoods spread by doctors, according to Richard Pan, a Sacramento pediatrician, California legislator, and a top foe of the evidence-free opponents of vaccinations. This is one typical comment from Pan in a media interview about doctors’ professional responsibilities in infection fighting:
“We have to be willing to take a stand. We need to be able to respond to this pandemic and future pandemics but there is this asymmetrical warfare going on right now, and we’re seeing the anti-vaccine movement trafficking in misinformation, threats, and violence.”
Pan and other proponents of dealing with “the most egregious” instances of the dangerous spread of medical misinformation, say the California lawmaker-passed doctor disinformation measure protects professionals’ free speech while reminding them of their legal duties, the New York Times reported:
“The law would designate spreading false or misleading medical information to patients as ‘unprofessional conduct,’ subject to punishment by the agency that licenses doctors, the Medical Board of California. That could include suspending or revoking a doctor’s license to practice medicine in the state. While the legislation has raised concerns over freedom of speech, the bill’s sponsors said the extensive harm caused by false information required holding incompetent or ill-intentioned doctors accountable.”
The newspaper noted that states have split on efforts to provide oversight over outspoken doctors:
“California’s legislation reflects the growing political and regional divisions that have dogged the pandemic from the beginning. Other states have gone in the other direction, seeking to protect doctors from punishment by regulatory boards, including for advocating treatments involving hydroxychloroquine, ivermectin, and other medications that the American Medical Association says remain unproven.”
The New York Times noted that, nationally, the group representing state medical boards and a leading physicians’ group has talked tough about doctors and disinformation:
“California’s response follows a warning last year by the national Federation of State Medical Boards that licensing boards should do more to discipline doctors who share false claims. The American Medical Association has also warned that spreading disinformation violates the code of ethics that licensed doctors agree to follow.”
Still, news articles have reported that the cases have been few where doctors suffered consequences for speaking up with false or erroneous medical information, notably about the coronavirus, its treatment, or vaccines. The California law, the New York Times reported, likely will be challenged in courts, and Gov. Gavin Newsom has not said whether he will sign it into law.
Chest-thumping in the abstract, fears of hyped results
The JAMA study on researchers amping up the language they use to describe their work makes important points on why patients and the public should care about this issue, as Stat reported:
“Whether consciously or unconsciously, scientists use subjective language to promote their work. And while it’s not strictly unethical like data manipulation or more severe forms of spin, those kinds of linguistic choices can affect how proposals are evaluated, for better or for worse, said study author Neil Millar from Japan’s University of Tsukuba … On its own, the findings on hype in grant applications may not seem ‘exciting’ or ‘incredible.’ But it’s part of a body of work with wider implications. Millar and his long-term research partner Brian Budgell of the Canadian Memorial Chiropractic College have previously looked at the prevalence of hype in randomized control trials and interviewed researchers who learned English as a second language about their use of hype. Millar is curious about the industry structures that generate hype. One theory he has is that grant money, which at academic institutions can fund much more than the research that earned it, is a major incentive for researchers. Bringing money to a university can create more opportunities and favorable treatment in an extremely competitive field. That structure may encourage applicants to use certain language to inflate the worth of their research … And when such overuse begins at the application stage of research, it could create a pattern of exaggeration that continues through the final paper. This can cloud a reader’s understanding of a study by overestimating its importance or simply muddle one’s understanding with excess words.”
The researchers, besides their cautions about hype’s harms in scientific research, also are tracing its origins, with distressing, early ideas on this issue, Stat reported:
“And where does the actual language come from? Millar is already at work on his next project to answer that question, too. In some preliminary data analysis of all previous NIH calls for grant applications, he found that all of the hype adjectives identified in this month’s study also appear in information from the NIH telling people how to apply for grants. It may be the case that the rise in hype words in applications has happened, in part, because regulators planted the seeds.”
For cancer patients, sad, final miscues
Dr. S. Monica Soni has found herself in the uncomfortable position, as a physician and as a close friend of a patient Zach, in also acting as a truth-seeker — with compassion. As she explained in her Stat Op-Ed, she steered herself into a three-way conversation with her friend whose health was clearly failing fast, and his doctor. She did not want to meddle in her friend’s medical treatment, nor did she want to embarrass an able specialist:
“I planted the question, ‘Is his current round of chemotherapy palliative or curative?’ A pregnant pause, then came the physician’s reproach to Zach: ‘Your oncologist should have told you that a long time ago.’ That’s when I realized that Zach and his husband, parents, and siblings still hoped for a cure. That hope had sustained them as Zach endured hours in chemotherapy infusion chairs, through rounds of radiation, and during several hospitalizations. Zach’s doctors knew he had terminal cancer. He and his loved ones, somehow, did not.”
Soni wrote that complex circumstances could be faulted for this faulty patient view of his condition:
“Zach died with his husband by his bedside. I hate that they didn’t know earlier that death was fast approaching, and I believe that his doctors shoulder the blame by not telling him in a way they could understand. Zach’s experience is all too common. In a report in JAMA Network Open this year, among people age 70 and older being treated for incurable cancer, 41% believed they had more than five years to live — but only 10% of their oncologists agreed with their estimates. And nearly 60% of patients believed their terminal cancer could go away and never return. I find that heartbreaking. I’m an internist who, for the last two years, has explored how to make sure that people with cancer receive high-quality care that aligns their treatment with their goals and values. The deeper I go, the more my optimism fades that our health system is set up to elicit patients’ wishes and disclose the facts that allow them to share in decision-making.”
Soni argues that doctors, Big Pharma, and federal regulators all contribute to misinforming patients about the gravity of their illness:
“Unrealistic expectations fueled by direct-to-consumer pharmaceutical advertising depicting happy cancer survivors and the pharma industry’s influence on oncologists hang over patient-doctor conversations. For every truly game-changing new drug or treatment indication, dozens of others offer just days or weeks of additional survival — if any — but at additional costs of hundreds of thousands of dollars and false hope. The Food and Drug Administration’s accelerated approval track, which was meant to help people with serious illnesses receive beneficial therapies sooner than the traditional review process, may cost more than it helps. Medicare spent an estimated $569 million between 2017 and 2019 on cancer drug indications that didn’t improve patients’ overall survival. Oncology, sadly, is a cash cow. From 2010 to 2019, revenue generated from cancer drugs increased 96% for the 10 largest pharma companies, and in 2019, cancer drugs made up 27% of their total revenue. Overconfidence in drugs is one reason doctors don’t talk more about services that do improve both the quality and quantity of life with their patients with advanced and terminal cancer, such as early palliative care. A 2021 survey of oncologists showed that just 17% follow guidelines that recommend they refer a patient diagnosed with metastatic disease to palliative care — and these same oncologists acknowledged that early introduction of palliative care leads to better patient outcomes. The reasons for this gap include perceived patient resistance, lack of time, and insufficient tools to educate patients.”
The doctor has a rebuke and prescription for how her colleagues and the U.S. health system can better serve patients, especially those in dire medical straits:
“Physicians should be responsible for overcoming health literacy barriers, time constraints, and mistrust to ensure that their patients understand all available options. Anything outside of that is not informed consent. Before patients agree to chemotherapy riddled with unpleasant or harmful side effects, they should have a complete picture of what it will gain them in terms of months of life, quality of life, and symptom burden. For themselves, physicians are overwhelmingly likely to choose non-aggressive care at the end of their lives and up to one-third of oncologists wouldn’t accept the chemotherapy they prescribe. This suggests a lot goes unsaid when physicians break bad news to patients abut terminal cancer and other fatal diseases and offer next steps.”
In my practice, I see not only the harms that patients suffer while seeking medical services, but also their struggles to access and afford safe, efficient, and excellent health care. This has become an ordeal due to the cost, complexity, and uncertainty of treatments and prescription medications, too many of which turn out to be dangerous and bankrupting drugs.
While it is true that all of us must strive to become savvier about medical and scientific information, notably now this also applies to research publications. We also must be able to rely on the education, experience, and professionalism of our doctors. They must provide us appropriate, clear, evidence-based, candid, and useful information about our medical care and the services for which we pay huge sums. We don’t need doctors who only want to advance their own wild-eyed notions or their craven political ambitions (are you listening Pennsylvania voters?) We know the world of medical and scientific research can be challenging. But what’s the point of publication pomposity and how does it improve patients’ health and well-being? We also must have doctors who treat us grownups, with empathy and compassion, yes, but also with candor and honesty, especially after herculean struggles at the probable end of our lives.
We have much work to do to ensure the safety, affordability, access, efficiency, and excellence of our health care, which must be not a privilege but a right.