“Don’t confuse your Google search with my medical degree.” — Phrase that appears on mugs and memes.
Eve Bloomgarden, MD, an endocrinologist at NorthShore University Health System, based in Evanston, Illinois, has experienced the benefits and drawbacks of patients going online to learn about their medical conditions.
One patient, a 70-something woman with osteoporosis, went through multiple tests, reviewed treatment options with Bloomgarden, and agreed to a medication plan. Days later she left a message on the patient portal: Her internet search indicated that the medications “make bones weaker” and “will make my teeth fall out.” The woman opted to heal “naturally,” including through “bone strengthening exercises” at a gym.
Ten months later she returned to the doctor with chronic pain from fractured vertebrae. She’s now on a medical plan to avoid more fractures, Bloomgarden says, but suffers “a reduced quality of life.”
By contrast, a 58-year-old patient with thyroid cancer also sought guidance through Google. She found a credible online resource about the disease, joined a virtual support group of fellow patients, and attended a virtual conference. What she learned boosted her confidence in her medical treatment and alleviated some of her anxiety. She now discusses her findings with Bloomgarden, discovers clinical trials they might try, and supports other patients through the virtual group.
Both types of scenarios are increasingly playing out in doctors’ offices and hospitals, as more and more patients arrive with information they’ve found online about their ailments and potential treatments — creating opportunities for doctors to work with them more effectively, while posing challenges from patients who contest their physicians’ advice with information that might not be credible.
“More than ever before, patients come to the clinic or the hospital having done research” about their conditions, says Jonathan Marron, MD, MPH, pediatric oncologist at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center and director of clinical ethics at the Harvard Medical School Center for Bioethics.
The phenomenon has grown exponentially with the expansion of free information on the Internet, and was accelerated by the COVID-19 pandemic, as conflicting and erroneous advice led many people to contest the assessments of medical experts.
“A lot of patients thought they had answers, and a lot of patients wanted treatments that clearly had a risk of harm, with questionable benefits,” recalls Thomas Gut, DO, director of the Post-COVID Recovery Center at Staten Island University Hospital in New York. “A lot of times we had to have tough conversations and say to the patients, ‘This probably wouldn’t help you.’”
Overall, however, patients’ research into their medical conditions might improve how they work with their doctors. An analysis of 25 studies on the practice, published in 2020, found that “while health professionals’ views were mixed,” patients reported that “they usually conducted an online search to form a partnership with the healthcare professional as opposed to trying to prove them wrong.”
Doctors understand why patients research their ailments on their own, particularly for conditions that are difficult to diagnosis or treat.
“It’s really frustrating to not feel well and not have any answers,” Bloomgarden says. “People are reaching for hope.”
Ideally, doctors and patients will use the information that patients find to have in-depth discussions about their conditions, explore alternative assessments, and adjust their courses of action.
“It’s very valuable to have informed patients,” says Gut, who is also associate chair of medicine at Staten Island University Hospital, part of Northwell Health. “They tend to be more self-motivated, and they already have the gist of what needs to be done to manage their illness.”
For particular ailments such as diabetes and lower back pain, Gut says, “there are benefits to patients looking up things, trying their own exercises, trying their own meals,” while keeping their doctor informed.
“When patients and families participate in planning and decision-making, it’s mutually beneficial,” says Beverley Johnson, FAAN, CEO of the Institute for Patient- and Family-Centered Care.
Absorbing a patient’s research into the care plan requires a doctor to adopt a mindset of humility, rather than dismissing someone’s Google search out-of-hand.
“We don't know everything,” Bloomgarden says. “You have to be open to the possibility that the patient knows more than you do about what’s going on” with their own bodies.
Patients who combine their symptoms with research about them can help doctors explore a diagnosis they might not have considered. For example: One day a man arrived in the emergency department after having fainted from hypoglycemia (low blood sugar), recalls Kenny Banh, MD, an emergency medicine physician and assistant dean for undergraduate medical education at the University of California, San Francisco at Fresno. The condition had “happened with some frequency” and ran in his family, Banh says, but medical tests had turned up no cause, such as diabetes.
On this visit, Banh recalls, the man said he researched his symptoms online and thought he might have a metabolic disorder. That prompted doctors to run tests that revealed a genetic disease that impeded his body’s ability to store glycogen and regulate glucose.
“We probably would have more quickly observed and discharged him if he had not done his homework,” Banh says. And one day, the man would have fainted again. Instead, the doctors developed a treatment plan to help regulate his low blood sugar.
Patient homework can steer doctors to try new treatments as well. At Dana-Farber, Marron recalls parents who brought in a research paper about a medication that might reduce the side effects of a cancer drug their child was taking. The drug had not been used for that purpose with this particular cancer, he recalls.
When the medical team looked into the drug, they found reason to believe it might help and no reason to believe it would cause harm, Marron says. They helped the family get the medication — and it seemed to work.
While the use of the drug for that purpose was “pretty much unheard of at the time, now it’s much more common,” Marron notes. “This family was ahead of the game.”
“I think we tend to close the door on things like that [therapeutic ideas from patients] a bit more quickly than we should,” Marron adds.
One key is determining if the approach the patient wants to try might harm them or interfere with their prescribed treatment. Doctors say that treatments such as massage, meditation, acupuncture, ice baths, and certain vitamins are often fine.
“If there is no harm to it, I would never tell patients not to try something,” Gut says. “Give it a shot. Maybe the patient feels somewhat better” as a result.
On the other hand, sometimes the alternative treatments can cause harm, posing a challenge for physicians.
Do no harm
An oncology patient was breaking out in rashes, and doctors at UAB Medicine in Birmingham, Alabama, couldn’t figure out why, recalls radiation oncologist Kimberly Keene, MD. The patient wasn’t on radiation at the time, and suspending some of his prescribed medications didn’t help. Finally, doctors asked if he was taking medications or supplements on his own.
"He came in the next day with a grocery bag full of supplements” that he had heard might help, Keene says. Once he stopped taking the supplements, his rashes disappeared.
“Now I tell patients, ‘I want to know everything you’re taking, and if you’re going to start something new let’s talk about it first,’” Keene says.
Some patients, however, insist on trying treatments or getting diagnostic tests that have little or no backing in evidence or have not been approved for specific uses by federal health care regulators. For doctors who are confident that their own plan is best, rejecting a patient’s request for alternative care can imperil the physician’s relationship with that patient.
To reduce that risk, doctors can express respect for the patient’s efforts to find information to help themselves.
“If you say, ‘You’re wrong. This is garbage,’ the human response is going to be, ‘I’m shutting down from this person. This is not a doctor I trust,’” notes Banh at UCSF. “You haven't helped that patient.”
The response, Johnson advises, should be along the lines of, “There’s so much information out there. How can we work together to sort it out?” She says doctors should ask patients where they got their information, discuss their own findings and decision-making, and provide credible sources for specific medical conditions. (Doctors cite websites by the National Cancer Society, the National Institutes of Health, the Endocrine Society, and patient resource centers created by hospitals as particularly clear and helpful.)
At Dana-Farber, Marron has such discussions with patients.
“I sit down and say, ‘“I understand why this seems like this would be exciting. But I’m worried that that's not the direction we want to go and let me explain why.’”
While that approach often works, it might have little impact on patients who’ve reached firm conclusions by the time they talk with their physician. That’s why some doctors urge their patients to hold off on doing extensive research until they’ve gotten a full medical assessment.
“Dr. Google can really steer you in a bunch of directions that you don’t need to go,” Keene says. “That can cause a lot of unnecessary stress, because you don’t know for sure what you’re dealing with.”
When patients remain unmoved, doctors have to draw a line on what they’re willing to try.
“I'll say, ‘I’m not going to recommend something for you that is not evidence-based, that is not proven to be safe or effective, or that I don’t think is appropriate,’” Bloomgarden says.
Some patients react angrily: raising their voices, storming out, leaving angry messages through patient portals. Some go looking for a doctor who agrees with their request or decide to treat themselves without a physician’s guidance.
“You wish them the best and hope that they come back,” Gut says.
In the long run, doctors say it’s best to take a measured, big-picture view of working with patients who bring their own medical research to the exam room.
“A well-informed family is a wonderful thing for physicians,” Marron says. “It helps to make discussions — about treatments, about side effects, about what to expect, and about hopes and expectations — that much easier. That helps to build a therapeutic alliance.”