Are educated patients good for medicine?

Rich Horecka, MD, still knows what it’s like to be the “voice of God” for his patients.

The family doctor in rural Benson, Minnesota, cares for many elderly patients, including a handful over the age of 100. He has treated some for decades and the older they are, the more they accept his recommendations without question.

“Whatever I tell them is gospel,” he says.

Their children and grandchildren? Not so much. When his elderly patients are accompanied to appointments by younger relatives, Horecka is more likely to face questions about treatment plans, diagnoses, options and the latest research. His word is no longer gospel.

In the 34 years he’s been in practice, he has seen the doctor-patient relationship evolve from one in which physicians did all the talking while patients listened to one in which it’s not uncommon for patients to produce a stack of internet printouts and announce they’ve diagnosed themselves.

Horecka, who is part of a large multi-specialty practice, welcomes the change: “I tell my patients, ‘This isn’t my disease; it’s yours. I want you involved.’”

Paging Dr. Google

Virtually every primary care physician deals with self-educated patients, people who consult a variety of sources for information about their conditions and treatments and who sometimes regard the advice of their doctor as just another opinion to be taken under consideration.

There are several reasons why patients have become more proactive and less deferential to physicians, including a decline in the prestige of doctors brought on by news of medical errors and misconduct, direct-to-consumer advertising by pharmaceutical companies, misleading media coverage of medical research, the rise of alternative medicine and patients’ growing share of healthcare costs. But the primary reason patients are doing their own research is because they can.

The internet makes it easy by putting an overwhelming amount of healthcare information—phony and legitimate, sponsored and independent, clinical and anecdotal—designed to educate and designed to sell—at the fingertips of patients. More than a third of U.S. adults have gone online to diagnose a medical condition that they or someone they knew had, according to a 2013 study from the Pew Research Center’s Internet & American Life Project.

The survey found that 59% of adults looked up health information online, with search engines like Google and Yahoo as the most popular starting points. Non-clinical health websites like WebMD were the next-most popular places to search, followed by Wikipedia, Facebook and other social media sites.

Of those who went online to research a condition, 46% said their findings led them to believe they needed help from a medical professional. Another 38% said they thought they could treat it themselves.

However, only 41% said that a doctor confirmed their self-diagnosis; 35% said they did not seek a professional opinion; and 18% said the professional did not agree with their conclusion.

Educated patients

It’s widely accepted that engaged patients tend to see better outcomes and are more likely to adhere to treatment plans. And if self-guided research is an indicator of patient engagement, it would stand to reason that self-educated patients are better patients. Physicians who favor patients doing their own research certainly think so.

“I definitely think it’s a good thing,” says Kenneth Olson, MD, a retired family physician and faculty member of the American Academy on Communication in Healthcare, which offers programs and resources to improve communication among healthcare professionals and patients. “I wasn’t sure what to think the first time a person brought a sheaf of printouts to me and said ‘I found this on the internet,’ but it didn’t take too long for me to realize they were
really invested in their care.”

“Today, we’re increasingly responsible for the quality of care we deliver and we’re responsible for keeping costs under control. In both of these areas, an educated patient is our best patient,” says
Danny Sands, MD, a Boston-based internist and cofounder of the Society for Participatory Medicine, a Massachusetts nonprofit that promotes greater collaboration among healthcare professionals and patients.

But there is no shortage of doctors who would agree with the 18th century British poet Alexander Pope, who wrote, “A little learning is a dangerous thing.” A posting on the website Quora last year asked why doctors get irritated at patients who research their conditions. The most popular answer came from a retired physician:

“Because, commonly, patients acquire misinformation, which requires that the doctor spend extra time explaining why it is incorrect, and because they seldom come up with anything helpful. It is difficult for most patients to understand how to evaluate sources of information for reliability, how to critically evaluate medical information, and how to tell what is important and what is not.”

Information accuracy

The internet serves up answers according to the wording of the query, search engine algorithms, the availability of information and the searchability of the websites. So how accurate is medical information online?

Not very, according to a 2012 study in the Journal of Pediatrics. Researchers Googled 13 search phrases related to safe sleeping practices for infants, then compared the information on the first 100 websites identified in each search to the recommendations of the American Academy of Pediatrics (AAP).

Of those websites, only 43.5% contained recommendations in line with the AAP’s, while 28.1% contained inaccurate information and 28.4% of the websites were not medically relevant. Furthermore, of the websites identified by searches, 19% were retail product review sites and 19% were associated with specific companies or interest groups.

Product review sites had the lowest level of medical accuracy (8.5%), while government websites and those of national organizations had the highest levels of accuracy (80.9% and 72.5%, respectively). Educational websites were only 50.2% accurate. 

Search engines serve up a confusing mélange of links in response to queries. Enter “Do I have diabetes?” into Google and the first page of results includes links to a charitable foundation, WebMD, health.com, Healthline, a Reader’s Digest article, the American Diabetes Association, two blogs about diabetes management, a Mayo Clinic article, even the Choctaw Nation health site.

Filtering all of that to find reliable, relevant information can be challenging even for a medical professional. 

Admitting you’re human

There is another reason why physicians might roll their eyes at self-educated patients: They’re not used to being challenged by them.

Accustomed to the asymmetrical nature of the doctor-patient relationship, some physicians have a hard time adjusting to self-empowered patients, says Sands from the Society for Participatory Medicine. “Historically, doctors have delivered information in small, bite-sized units because knowledge is power,” Prescott says. “Maybe we fear that if we give too much information we’ll lose some of our power.”

And, sometimes, the patient stumps the physician. Communicating effectively with educated patients can mean physicians must admit to not knowing everything. Faced with a patient citing an unfamiliar study or online article, a physician’s reflexive response might be to dismiss it or bluff their way through it. 

“As I’ve grown in experience and maturity, I’m more comfortable saying I don’t know,” says John Prescott, MD, chief academic officer of the Association of American Medical Colleges. 

Primary care physicians are more likely to be faced with something unknown because of the wide range of their practices and diversity of their patients, he says. 

Increasingly, medical schools are teaching students how to interact effectively with patients who have their own ideas, Prescott says. He notes that older faculty members, accustomed to unquestioning patients, sometimes have difficulty teaching that skill, while younger physicians who grew up with the internet are likely to be more accepting of their patients’ queries.

How to react

Of course, not all self-educated patients learn the right lessons.

Some present their doctors with false and even harmful information. Some find third-hand anecdotes on forums and fringe science to be more credible than anything their physician says. This can be exasperating. What pediatrician would not want to scream in frustration when confronted by a parent citing Jenny McCarthy’s baseless pronunciations on the dangers of immunizations?

But doctors need to remember that many patients are scared and need reassurance, says Laolu Fayanju, MD, a family physician in Chicago. “They’re looking to pretreat themselves with internet knowledge,” he says. Most of his patients are elderly and only about 10% do research, Fayanju says, adding that he wishes the percentage were higher because it means the patient is engaged in his or her treatment. 

No matter the merits of the information, physicians should resist the urge to dismiss it. It’s important to recognize that the patient is interested, which is better than being apathetic or in denial.

Ajoy Kumar, MD, a family physician in St. Petersburg, Florida, says it is not
unusual for him to spend the first 10 minutes of a 15-minute appointment discussing a patient’s research and answering questions. While that can be frustrating, he says it is an opportunity to teach the patient about credible sources for information.

“You have to educate them about what sites are good,” Kumar says, adding that it’s important not to put patients on the defensive by dismissing their findings. And it’s preferable to have patients come to the doctor with printouts and questions rather than diagnose and treat themselves, he adds.  

Physicians have a duty to warn patients if their research is incorrect, particularly if it might be harmful. “I’m not afraid to let patients know if the stuff they’re using is junk,” says Horecka, the practitioner in rural Minnesota. “After 30 years (of practice), I’m pretty sure of myself and I’m not afraid to disagree with them. I’m also open-minded enough to realize I don’t know everything.”

The research a patient does also can give a physician valuable insight into the patient’s fears and priorities, Sands says.

Guided research

It’s unrealistic for physicians to expect that patients won’t look up symptoms and diseases. And physicians can’t control their patients’ education, internet search skills or ability to distinguish good evidence and research from bad.

In the worst cases, patients might be so convinced they’re right that they defy their doctors, fail to adhere to the prescribed treatment plan or even go doctor shopping until they find one more sympathetic to their ideas.

Since patients will go online, it’s a good idea to send them to reliable sites. Fayanju says he steers patients to the National Institutes of Health, the Centers for Disease Control and Prevention and other credible sources. 

Here, primary care physicians have an advantage over specialists in that they tend to have longer relationships with their patients and sometimes they can draw on that trust to persuade patients to follow the right course.

It’s important to remember, however, that most patients will have difficulty wading through clinical reports and need information written to their level. Physicians can stock their offices with commonly-used material and printouts from credible sources.

Physicians also can teach patients to identify sites sponsored by pharmaceutical companies or businesses hoping to sell treatments or medicines. The information on them is not necessarily compromised, but the patient should be aware of the commercial motivation behind it.

The important point is that, regardless of what the poet wrote, a little learning doesn’t have to be a bad thing.