A Failure to Communicate
Where Our Scientific Institutions Fail Us (Part One)
The US Centers for Disease Control and Prevention (CDC) is the world’s premiere government-run epidemiological agency. It responds quickly to the earliest reports of emerging public health threats like new epidemics and brings to bear the most sophisticated science available today. It is, for example, how the CDC tracked down the organism that causes AIDS—HIV–and its mode of transmission (exposure to infected bodily fluids) at the very beginning of the epidemic. That saved millions of lives.
The U.S. Centers for Disease Control and Prevention (CDC) is the world’s premiere epidemiological agency (Source: Shutterstock)
But there is an important way in which CDC, like many federal scientific agencies fall short and that is the way they communicate what they do and what they learn to its consumers, including front-line healthcare practitioners and the general public. A recent case in point is the way CDC handled its response to the opioid epidemic.
Beginning in the 1990s, the U.S. saw a huge surge in prescriptions for opioid painkillers like oxycodone (brain name: oxycontin), hydrocodone (brand name: Vicodin), and oxymorphone. As we noted in another commentary, there were many reasons for this rapid increase in the prescription of opioids. These included the medical profession beginning to recognize that it had been neglecting patients’ pain complaints; the emergence of professional pain societies that began urging more attention be given to pain; a regulatory organization declaring that pain is the fifth vital sign;” and pharmaceutical companies inaugurating a campaign to convince doctors that their proprietary opioid painkillers were not addictive or dangerous.
The result of these different trends has been catastrophic: addiction to opioids and deaths from opioid overdoses, both prescribed and illicit (like heroin and fentanyl bought from drug dealers), has reached epidemic proportions. In 2017, 47,600 Americans died from opioid overdoses, 11.4 million misused prescription opioid medications, and 2.1 million met criteria for opioid addiction (known as opioid use disorder by medical professionals). Although opioids are indeed very effective analgesics (painkillers), clearly they are not as safe as their manufacturers wanted us to believe. The U.S. government declared a public health emergency and widespread attempts began in the last decade to rein in the prescription of opioids.
CDC Steps In
No one disputes that by 2000 an epidemic of opioid misuse, abuse, and overdose had overtaken many countries, especially the U.S. Because epidemics are the specialty of CDC, it joined innumerable professional, state, and federal organizations in developing proposed ways to cut down on unnecessary opioid prescribing. In 2016 CDC released its own “Guideline for Prescribing Opioids for Chronic Pain”. These guidelines were developed based on careful evaluation of all the existing science concerning opioids, including the fact that there is almost no evidence showing they remain effective beyond three months in patients with chronic non-cancer pain. The CDC guideline included prescribing doses lower than were found in almost any other guidelines that existed at the time. They also say that three days of opioid painkillers is usually enough, more than seven days rarely necessary.
Because CDC is, with very good reason, such a respected agency, its opioid prescribing guideline was taken very seriously. State Medicaid agencies began implementing them, health insurance companies began refusing to reimburse for higher doses or longer courses of opioids than recommended in the guideline, and prescribers began behaving as if the CDC opioid prescribing guideline is mandated practice.
We have indeed seen rates of opioid prescribing decrease in the U.S., but the effects of the CDC guidelines turn out not to be entirely positive. Almost immediately after the guidelines were published, the American Medical Association (AMA) issued a statement expressing its fear of “possible unintended consequences associated with implementation, which includes access and insurance coverage limitations for non-pharmacologic treatments, especially comprehensive care, and the potential effects of strict dosage and duration limits on patient care”.
The AMA’s concern was unfortunately realized. Some prescribers, perhaps fearing they would be disciplined for “violating” the guideline, immediately discontinued prescribing opioids to their patients with pain issues when the doses or length of time they had been on them exceeded the guideline recommendations. Such abrupt cessation of opioids, however, results in a very distressing set of withdrawal symptoms that prompts some people to seek opioids like heroin or fentanyl illegally, while leaving others to cope unaided with renewed and disabling pain. Doctors in many cases failed to help patients find alternative treatments for their pain or to properly counsel and treat patients who had become addicted to opioids. Finally, patients with clear and medically justified need for opioids, such as those suffering from metastatic cancer or sickle cell anemia, faced new difficulties in getting them from prescribers.
CDC On the Defensive
In an April 2019 article in the prestigious New England Journal of Medicine written by three authors, two of whom are with the CDC, the problem was described as a misinterpretation of the guideline: “Unfortunately, some policies and practices purportedly derived from the guideline have in fact been inconsistent with, and often go beyond, its recommendations”. The CDC also released a statement warning against what it called the “misapplication” of its opioid guideline, making clear that it is not mandatory and does not call for abruptly discontinuing high doses of opioids or restricting access to opioids for patients who should be taking them.
The CDC’s response to these unintended negative consequences is essentially defensive, ascribing the problem with the guideline solely to how prescribers and the public understand it. Putting blame aside, however, we see here a common shortcoming of our national scientific agencies: the failure to understand that everything they do will ultimately enter the public domain, be reported on by mass media, and acted upon by various players in diverse ways. CDC should have anticipated that people would take the guideline as gospel; the AMA predicted that would happen immediately upon its release, and it did. Most important, CDC should have had a plan in place from the moment it released the guideline in 2016 to explain to practitioners and the public how to interpret it. The problem is not with the guideline itself, which is a model of data and evidence synthesis, but rather with the failure to communicate what is in it to people who do not read fine print or pay attention to the technicalities of data analysis but are charged with making major decisions about how things are done in the world of medicine and healthcare.
What CDC needs is a dedicated office of public communication that does rigorous research on how non-scientists understand scientific communications and what works to influence them to infer the correct messages from them. That office then needs to apply the newly acquired knowledge to proactively communicate with the public, communication that will be seen by the agency as every bit as important as publishing papers in its own Morbidity and Mortality Weekly Report (MMWR) and the New England Journal of Medicine.
We will continue to advocate for all federal and state scientific agencies to develop and use evidence-based approaches to communicate their findings to their non-scientist consumers. Next month we will consider how two other agencies, the Food and Drug Administration and the Environmental Protection Agency, need to follow this advice.