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How physicians can adapt to the patient empowerment trend
In his 24 years of practice, family physician Rob Danoff, DO, has noticed a significant change in the way patients approach their medical care.
Early in his career, patients viewed him as their main source of information about their health problems and how to treat them. Now that’s no longer the case.
“I have multiple patients using internet resources to find out about their medical care, insurance co-pays, what is involved in procedures, what is involved in rehabilitation after procedures, the quality of the doctor, and the hospital facilities,” he says.
Danoff, the director of the family residency program at Jefferson Health’s Sidney Kimmel College of Medicine in suburban Philadelphia, is hardly unique when it comes to patients who’ve done extensive homework about their health problems and how they might be treated. Doctors and healthcare experts say growing numbers of patients are becoming empowered-a term the World Health Organization defines as “a process through which people gain greater control over decisions and actions affecting their health.”
On an everyday level, an empowered patient is one who searches for health and wellness information on their own rather than waiting to get it from their doctor, then partners with their doctor in deciding the care they need, who should provide it, and where, explains Jan Oldenburg, a patient engagement consultant, blogger, and author of Participatory Healthcare: A Person-Centered Approach to Healthcare Transformation.
“Empowered patients are very clear that they have the ultimate responsibility for their own health and that the ultimate decision-making is in their hands,” Oldenburg explains. “They view doctors as advisers and resources rather than all-knowing authority figures.”
The roots of patient empowerment
Experts point to a variety of factors coming together in the last few years to foster the empowerment trend, starting with the ready availability of health and medical information via the internet, but also including the popularity of social media and ubiquity direct-to-consumer pharmaceutical advertising.
“We’ve seen a real explosion in the kind of information that ordinary people can get access to about their own health and from sources like medical journals and results of clinical trials,” Oldenburg says. “That means patients today can go pretty deep into their health issues and quickly get to a position where they’re at least asking questions that might lead their doctors to do additional research.”
Oldenburg cites the example of a patient profiled in her book, who suffers from lupus. “She told me, ‘my doctors may have an MD degree but I’ve got a PhD in lupus. I’ve lived with this condition and understand it in a deep way that can inform how we think about treatments.”
In addition, the internet has made it easier for people to find advice and support from people with similar health challenges through message boards, groups on social media, and organizations such as PatientsLikeMe and the Society for Participatory Medicine.
“Whereas traditionally patients turned to big organizations like the American Heart Association for information, now there are a lot more informal ways to connect with other patients and learn from them,” notes Emmy Ganos, PhD, a program officer with the Robert Wood Johnson Foundation.
Such networks can be especially helpful to people with rare diseases and conditions. “Those patients often know a lot about their medical issues and can teach each other things that their doctors may not know, like a home remedy or type of exercise that works well,” Ganos says.
Rating the providers
Growing numbers of patients are also using the internet to research and comment on the quality of individual doctors, practices and hospitals. A study published in the March 2019 issue of Health Affairs found that in 2015, 27 percent of respondents to a longitudinal survey consulted online rankings or reviews of doctors, compared with 17 percent who did so in 2012.
Another development fueling patient empowerment, experts say, is financial: as a result of rising copays and deductibles, and the growing popularity of high-deductible insurance plans, patients often face substantial payments even for routine tests and procedures and generic medications.
“It used to be that if you got really sick, you could be on the hook for huge amounts,” Ganos says. “Now it’s common to find that even if you’re relatively healthy or have a pretty well-controlled chronic condition, you could still be paying thousands of dollars out of your own pocket.”
The upshot is that patients are far more attentive to costs than they used to be. “You find more people are willing to ask, ‘is this [procedure or test] really necessary?’ or, ‘maybe I can find an alternative that works better for my budget,‘” she says.
Danoff says cost concerns drive many of his retired patients, who often live on fixed incomes, to do their own research before coming to see him--despite having grown up at a time when unquestioning acceptance of doctors’ recommendations was the norm.
“They’re looking at different costs of care and options for different medications based on their copays and overall household budgets, as well as things like a facility’s location and ease of access,” he says. “That’s a big change even from five or 10 years ago.”
The larger context
Along with money and access to information, Ganos says, patient empowerment is consistent with other trends in American society. Among them is distrust of authority, an attitude that first took root among baby boomers and has continued with younger generations. Tied in with that is a growing desire among Americans of all ages to take charge of all facets of their lives, including healthcare.
“The idea of a paternalistic medical culture doesn’t fit as well with people’s views of their lives as it did in the past,” Ganos says. “Patients understand that they know things that doctors don’t know about their lives and their health and have an expectation that they need to take an active role in their own healthcare.”
The fact that patients now have access to much of the same medical information as their doctors, and that more of them regard their doctors as partners rather than all-knowing authority figures has been difficult for some doctors to accept.
“When you have patients asking whether what you’re recommending is really the best treatment, bringing in their own information, it can feel threatening,” Oldenburg says.
Paul Wicks, PhD, vice president for innovation at PatientsLikeMe.com, a website geared to patients with rare and/or chronic diseases, says he hears anecdotal reports of doctors offended by patients using medical terminology, asking to try alternative medications to those their doctor has prescribed, or otherwise questioning the doctor’s advice. “A small number of physicians have been rude, or in rare cases fired the patient for attempting to use Dr. Google,” he says.
How doctors see it
Most doctors, however, say they welcome patients taking a more active approach to their healthcare. “I have long believed that knowledge is power, and people should be learning as much as they can about their current conditions and health generally,” says Leonard Reeves, MD, FAAFP, a family physician and associate dean of the Northwest Campus of the Medical College of Georgia in Rome, Ga.
Reeves left private practice about five years ago, but continues to see patients at a free clinic in Rome. He encourages those he treats to learn all they can about their health problems because it can spark a conversation that yields meaningful information.
“There’s only so much you can learn from lab tests and blood draws” he says. “At some point you’ve got to listen to the patient’s fears and concerns because it may be something totally different from their chief complaint,” he says.
Administrators and physicians at The Permanente Medical Group, the country’s largest medical group, see patient empowerment as vital to shared decision-making, which in turn leads to better outcomes, says Patricia Conolly, MD, executive vice president of information technology and an associate executive director of Permanente.
“Often there’s more than one way to address an issue or problem a patient is experiencing, and there’s mounting evidence that if the patient is part of making the decision, their adherence to whatever the recommendation is will be greater,” Conolly says.
Damon Raskin, MD, an internist in Pacific Palisades, Calif., has seen that dynamic play out in his practice. Patients who inform themselves about their health are more likely to adhere to a medication regimen and follow his advice, he says, particularly when it comes to treating chronic diseases such as diabetes or conditions like high cholesterol.
“I have some patients who don’t believe that lowering cholesterol is going to reduce their risk of heart disease, so if they become informed about it, that can help with adherence to taking a statin,” he says.
The drawback of patients taking more responsibility for their care is that the information they find on their own sometimes is misleading, incomplete, or simply wrong.
“Sometimes a patient will come in saying, ‘I need this test,’ or ‘I want to be on such-and-such antibiotic,’ and I have to say, ’but that antibiotic isn’t good for your particular condition,’ or ‘did you know it will interact negatively with one of your other medications?’” Danoff says. He urges patients who research online to look only at sites with a .edu or .gov in their web address, where the information is generally evidence-based and up-to-date.
Similarly, Danoff urges caution when patients say they don’t want to be treated by a certain specialist or admitted to a particular hospital because of a negative rating or comment on the web.
“I have to remind them that they’re reading one website or one comment and it may not be representative, the person may have had an ax to grind, so they should try to get information from different sources for a more accurate picture,” he says.
Raskin, too, is skeptical about the value of provider and facility ratings. “If patients don’t want to see me because they saw a negative comment online about my billing department, that’s their choice. But those patients who meet me and we develop a relationship, they’re usually quite satisfied with me and my office,” he says.
For Reeves, a danger of patients seeking out information online is that what they find may turn out to be a sales pitch disguised as objective information. “You can usually ferret out some of these more questionable websites simply by seeing what they have to sell,” he says. “I tell my patients, ‘if it claims to cure more than three things stay away from it, because it’s not going to do that.’”
In those cases, doctors have to spend already-scarce appointment time explaining why the patient’s information is wrong or inappropriate, thereby exacerbating the enormous time pressures they already face. The response many doctors adopt is to rigorously prioritize, says Wicks.
“When a patient comes in with hundreds of pages of internet printouts saying, ‘I found this miracle cure, what do you think?’ [these] doctors will say, ‘We don’t have time to go through all of this, what can I do for you at this appointment?’ Wicks explains, adding that it’s important to do so in a respectful way, such as offering to look at the information if the patient will send links to the websites where they found it.
Still, many doctors prefer a patient who come in even with bad information to one who is entirely passive in the relationship. “My view is the more information the patient has, the better,” says Kaiser Permanente’s Conolly. “It makes it easier to have a conversation, but more importantly, it tells us they’ve been thinking about their problem, and that’s a big part of eliciting a thorough and appropriate history. My nightmare is the patient who responds to questions with one-syllable answers.”
Ultimately, doctors say, harnessing patient empowerment in a way that helps the patient requires the classic traits of good doctor-patient relationships: trust, communication, and patience.
“It’s about taking the time to explain to patients that I’m suggesting a treatment or medication based on my years of schooling and my 23 years in practice,” says Raskin. “That’s what develops the sense of trust you need in the doctor-patient relationship.”
Conolly acknowledges that winning the trust of an empowered patient sometimes requires extra effort on the doctor’s part, but says that few doctors will object to the effort if it results in better patient care. “And after these conversations lots of patients will say ‘thank you,’ and that feels pretty good. It’s why we became doctors.”
Portrait of an empowered patient
Doug Lindsay may well be the ultimate example of an empowered patient.
Twenty years ago Lindsay, a resident of St. Louis, found his life turned upside down when he began experiencing a series of debilitating conditions including tachycardia, painful muscle cramps, and vertigo. He was forced to drop out of college, and wound up spending the next 11 years essentially bedridden for all but a couple of hours each day.
None of the doctors he consulted could explain his condition or how to cure it. So Lindsay decided to take matters into his own hands. “I realized if I just kept asking doctors what was wrong I might never get an answer,” he says. “So I pivoted and began tackling my problem as a scientist. I decided I would partner with the doctors, but take the lead in finding answers.”
Lindsay immersed himself in texts on physiology, endocrinology, and general medicine. Through his studies, he theorized the existence of a class of disorders involving dysfunction of the autonomic nervous system, which controls functions such as breathing and heart rate. He discussed his findings with his doctors, who were highly skeptical at first. “They said problems like this don’t exist,” he recalls.
Undaunted, Lindsay continued his research. He bought his first computer, enabling him to access articles through Medline and explore websites such as the National Organization for Rare Disorders for additional information. He presented a paper outlining his theory at an international medical conference, and found a collaborator who ran an academic laboratory researching autonomic dysfunction.
“Once he’d run the testing [on me] and had objective data, it was much harder for people to dismiss,” he says. And while it took 14 years and two surgeries, today he leads something close to a normal life, having developed a career as a lecturer, blogger, and what he calls “personal medical consultant” to people with rare or complex diseases and conditions.
“I have some limitations, but I’m no longer homebound,” he says. “I can travel and give speeches and go to the grocery store any time I want, which feels pretty good.”
While Lindsay’s experience is unusual, he thinks it holds lessons for doctors dealing with patients who are seeking greater control over their healthcare-starting with a willingness to treat the patient as a partner.
“If the doctor has a sign saying something like ‘your Google search is not the same as my medical degree’ they should take it down,” he says. “I think doctors need to regard empowered patients with the mindset that they have someone they can partner with.”
Even a patient who comes to an appointment with wrong information represents an opportunity if the doctor takes the time to listen carefully, Lindsay says. “The chance is there for the doctor to put aside the patient’s incorrect explanation of their symptom and say ‘tell me more about that sore on your leg,’” he says. “When we get back to things where the patient is the expert, which is making observations about their own body or feelings, it gives the doctor a chance to start from some place solid.”
Still, Lindsay says, the chance that a patient will misdiagnose their problem is outweighed by the benefits of shrinking what he terms “the knowledge gap” between doctors and patients.
“The existence of the Googles and the WebMDs represents a special opportunity for both sides because patients have access to more information and doctors can guide them through it,” he says. “You have two people working together instead of one being in the hands of the other. That can lead to much better outcomes than we ever had before.”