John J. Ryan: Solution to medical misinformation is patient empowerment
The role of providers in health care has always been to educate patients about diagnosis, prognosis and interventions. As a cardiologist, I am often asked how to prevent heart disease, what diet is best, how much exercise should people do, among other “heart healthy” questions.
More broadly, our colleagues in primary care are asked if doing crossword puzzles decreases the risk of Alzheimer’s disease, if vaccines cause autism, and what natural supplements can cure or help stave off a variety of ailments. This year, however, has presented a unique set of challenges as patients, family members and governing bodies have asked myriad questions about the novel coronavirus, the virus that causes COVID-19.
It has been challenging at times to provide answers to these questions, and it is unclear how we should respond to some of the more controversial ones. People are feeling vulnerable, and 2020 has taken away the ability of all of us to be in control our lives. Lockdowns, although necessary, have disempowered entire populations. Patients already feel disheartened by the limitations imposed on them by their disease and disability.
In this setting, there has been an embrace of nonevidence-based therapies or remedies for COVID-19, from hydroxychloroquine to gargling vinegar. There is no evidence to show that these interventions work. But during that sacred setting, the one-on-one clinic visit, when a patient advocates for fringe therapies, or suggests that the pandemic is a hoax, what should health care providers do?
In general, our instincts and training tell us to educate our patients. It is difficult, however, to know the best way to do this. Telling people that they are wrong can become confrontational and create mistrust, perhaps forfeiting future therapeutic relationships when the need becomes more overt during an acute illness.
Instead of correcting people, we should try to understand them. It is important to find out their concerns. It is worth reflecting on why the patient believes these fallacies. Why, in a time of considerable anxiety, would a patient embrace fraudulent claims or claims from untrustworthy sources?
If people can find the correct answer for themselves, that is going to be the most impactful long term. Health care providers can guide them in this search. We need to help patients find empowerment and hope in facts and science, rather than in lies and conspiracy theories.
There are times, of course, when there is a need for a hard stop, when the patient’s perceptions or beliefs are harmful but, again, the success of these interventions depends on maintaining the trust of the patient.
In medicine, we commonly acknowledge the problems with data and guidelines, and avoid recommendations without evidence. For example, dietary recommendations are famously understudied and, in an effort to be transparent, health care providers will often acknowledge the limitations of the data upon which guidelines are based.
We are accustomed to how science evolves based on new data becoming available. Egg yolks were once “bad,” but now they are “OK.” This is the medical world we live in, where an enormous amount of data is integrated and distilled and applied to the person in front of us. We have experience in handling this.
During the COVID-19 pandemic, the public has been exposed to this uncertainty and has experienced the impact of sharing and implementing research in real time. For example, we were initially told that we did not need masks, then we learned that masks were useful to prevent the spread of the virus to others, and now masks are deemed protective for the mask wearer. It is a roller coaster, and without the proper context and expertise, the inconsistency can undermine any recommendations that we make going forward.
As clinicians have become busier and taken on additional roles during the COVID-19 pandemic, the challenges of communicating with medical teams have become even more pronounced. This is again why the relationship between the patients and their health care provider is more important than any single recommendation — so that when the patients are in their time of crisis, they have a trusted, accessible source they can turn to without ever having felt disrespected or unheard.
As we partner with our patients to counsel, advise and educate, empowering people to make informed decisions will be key to countering the constant flow of medical misinformation available online.
John J. Ryan, M.D., is an associate professor in the Department of Medicine and the director of the Pulmonary Hypertension Comprehensive Care Center at the University of Utah.