With high costs, low satisfaction, and nearly half of U.S. adults living with chronic, often preventable, conditions, it’s no secret the nation’s health care system isn’t working for patients. Nor is it working for doctors, who complain of burnout brought on by time constraints, ever-growing bureaucracy, and interference from third-party payers. It’s not even working for government, costing up to twice as much per capita as health care in other wealthy nations while consistently landing the country toward the bottom of global outcome rankings from infant mortality to life expectancy.
The good news is that a single strategy—patient empowerment—may improve all of these things.
It’s not a new idea. In fact, patient empowerment has been around for decades. But now the growth of the internet is accelerating its rise, newer technologies are pushing it forward, national standards are increasingly enshrining it into mainstream thought—and study after study is showing that it works.
“You, the patient, have a unique body of knowledge about yourself that I can never hope to have,” says Tom Delbanco, the John F. Keane & Family Professor of Medicine at Beth Israel Deaconess Medical Center. “And unless you happen to be a doctor, I have a unique body of knowledge about medicine that you, the patient, can never hope to have. Our job is to merge those two knowledge bases to your greatest advantage, actually to our mutual advantage, since I succeed when you succeed.”
Nothing like a good win-win. But how can proponents of patient empowerment make sure they’re getting it right? How do they convince often-resistant stakeholders that increased patient engagement is a win-win? And perhaps most important, how can providers, employers, and social scientists change the long-entrenched behaviors of both patients and clinicians to realize this collaboration?
A clear view for all
“It’s a culture shift,” Delbanco says. “And that’s what’s hard about it. It’s hard to change culture.”
Change in medicine is notoriously slow, but in 2010 Delbanco, along with Jan Walker, an HMS associate professor of medicine at Beth Israel, introduced OpenNotes as a pilot program that offered patients secure online access to records of their primary care visits. At the time, the idea was considered radical—and it still is by many—even though today 40 million individuals have gained access to notes through secure electronic patient portals. In July, the practice was adopted in both the clinics and the wards of the National Institutes of Health Clinical Center. Delbanco predicts it will be the standard of care within five years.
Patients seem to love OpenNotes. They report it gives them more control of their care, helps them adhere to taking their medications, assists them in managing chronic conditions, and builds trust with their providers.
From the perspective of doctors, though, it’s been a tougher sell. “If I stop a random doctor on the street and say, ‘What do you think of the notion of sharing your notes with your patients?’ half of them would smile and say good idea,” he says. “The other half might slug me.”
They worry, Delbanco says, that offering patients ready access to their doctors’ notes will mean more work for physicians, confuse or worry patients, and engender detrimental self-censorship, particularly on topics that may be sensitive, such as weight, mental health, or substance use disorder.
Delbanco allows that physicians have to adjust their language when using OpenNotes. “When patients see ‘SOB’ it’s different from what I see,” he says, “which is ‘shortness of breath.’” But the trade-off for maintaining electronic health records—considered a hassle by clinicians whether patients can see them or not—in this way is that care may be streamlined when patients are more informed about their care plans and diagnostic results. Perhaps even more important, Delbanco points out, 20 to 25 percent of patients find mistakes in their charts that “could make a difference” in treatment decisions and perhaps ultimately lead to decreased litigation.
Once doctors, nurses, and psychotherapists start using the system, most become converts, he says. “I view OpenNotes and OurNotes,” a new Delbanco-Walker initiative in which patients and clinicians cogenerate notes interactively, “like a new medicine,” Delbanco adds. “All medicines have contraindications for some patients, but most help more than they hurt. Greater transparency is a very powerful medicine.”
The savvy consumer
Regina Herzlinger, the Nancy R. McPherson Professor of Business Administration at Harvard Business School, thinks transparency should start before a patient even enters a clinician’s office. It must begin in the workplace, she says, where more than half of the U.S. population gets its health insurance.
“People think of health insurance as a gift from employers,” says Herzlinger, “but most economists agree that it’s really just the employees’ income.”
Until 2017, she says, when unemployment reached a seventeen-year low and hiring and retention started becoming more difficult, employers were requiring employees to contribute greater and greater percentages to their health insurance premiums even as the value of the insurance declined, in part because of higher deductibles.
“And employees still don’t know what they’re getting for their money,” Herzlinger adds, because the policies’ actuarial values—the percentage of likely expenses they will cover—are not disclosed up front.
“There has been some improvement,” she notes. “Health care consumers are more informed than they used to be, but if you compare the level of information they have available for health care decisions to what’s available for a purchase as mundane as yogurt, it’s still woefully short of what people need.”
The only way this will change, she maintains, is if journalists begin to focus on the inequities and if consumers consequently demand that government impose transparency requirements and mandate that employers offer a wider variety of plans from which to choose.
“People think of health insurance as a gift from employers, but most economists agree that it’s really just the employees’ income.”
“I know this is a winnable battle,” Herzlinger says, offering as evidence the revisions that took place after employees in both the private and public sectors learned of employers’ mismanagement of pension funds.
“Innovation in health insurance might sound oxymoronic,” she adds, “but venture capitalists are investing in it because they know consumer unrest among employees is going to burst open.”
One of the changes she proposes is more health plans from which employees can choose. But if that were to happen, how would they know which one would be their best choice? How can consumers be given enough accessible information to make savvy choices but not so much that they are overloaded?
When Medicare Part D, the prescription drug benefit, was established in 2006, it offered nearly four dozen plans, a number that many economists, and 90 percent of doctors and pharmacists surveyed at the time, considered overwhelming. But, says Herzlinger, citing studies that suggest a learning curve, “the idea that there’s too much choice in Part D is not by any means a foregone conclusion. What is clear is that competition has made premiums go down.”
She points out that consumer education is the key.
“The missing ingredient in some studies that found consumers did not make optimal choices is they don’t evaluate the quality of information offered to consumers, which differs by source, timeliness, and relevance.” She’d like to see better online tools to measure risk aversion among consumers and specifics on various physicians—details such as who’s best at doing hip replacements on young athletes versus on older adult women—as well as metrics on items such as wait times for referrals and the likelihood that certain prescription requests will be refused by insurers.
This may sound like it would make choosing even harder—but it doesn’t have to.
“Structuring choice sometimes means helping people to learn, so they can later make better choices on their own,” write Cass Sunstein, the Robert Walmsley University Professor at Harvard and founder of the Program on Behavioral Economics and Public Policy at Harvard Law School, and economist Richard Thaler in their 2008 bestseller Nudge: Improving Decisions About Health, Wealth, and Happiness.
One simplifying strategy, they argue, is to institute a system of “collaborative filtering.” This could mean insurance websites that would operate like those that media-streaming services use, prompting consumers to buy based on similar customers’ choices. Another is the process of elimination: allowing consumers to set filters that reflect their priorities—such as lowest price, largest network, best diabetes clinics—and then sort search results in ways most useful to them. Plans that don’t meet their criteria can then be easily crossed off the list.
Giving people a high level of information so they can weigh all the costs and benefits can be a good thing, depending on the situation, Sunstein says.
“There’s a view of patient autonomy, a strong view,” he maintains, “which says it’s the doctor’s responsibility to figure out what the patient wants and just do it.” He contrasts that with a position he and Thaler call “libertarian paternalism,” in which “choice architects,” like government, health care providers, economists, and other experts, design user-friendly environments to guide people toward their best choices.
“Nudges can be aggressive or very soft,” says Sunstein. “It should be a little like a GPS device, preserving free will but steering patients in a direction the doctor thinks is best. In some medical circles the word ‘paternalism’ is a conversation stopper, but sometimes it is a mercy to relieve patients of the burden of choice.”
Different compass points
Other times, though, doctors may be surprised to learn that the decisions they deem medically best may not align with patients’ wishes.
“It is tempting to think patients think like you in terms of what matters,” says Michael Barry, an HMS professor of medicine at Massachusetts General Hospital and director of the Informed Medical Decisions Program at Mass General.
“But,” he adds, “we’ve learned again and again in research that patients care about different things.”
Barry advocates using shared decision making, or SDM, to arrive at the best treatment when there is more than one reasonable option.
“And,” he points out, “there usually is.”
“For so many conditions,” Barry continues, “people think there’s one right answer in terms of best treatment and that those who went to professional school know what it is. But different clinicians have different approaches, and once people understand there are options and that outcomes may differ, they’re enthusiastic about participating.”
One situation in which SDM is appropriate is in deciding treatment for prostate and breast cancers. For both, a watch-and-wait approach may be better for the patient than aggressive treatment, depending on many factors, including the location and stage of the cancer, the age of the patient, and the likely side effects of treatment.
Even if treatment is deemed appropriate, choices must be made. In early-stage breast cancer, for instance, one choice is between mastectomy and lumpectomy with radiation. Research shows the survival rate is the same, so why not take the less aggressive approach?
“Well, the answer is that some women don’t want weeks of radiation or the chance of a recurrence in the same breast,” says Barry.
Nancy Keating, a professor of health policy and medicine in the Blavatnik Institute at HMS, uses shared decision making when helping women decide when to have mammograms.
“We’ve oversold the benefits and undersold the harms for many tests,” she says. With the message of early detection permeating our culture and the harms of false positives and overdiagnosis rarely mentioned, she adds, few women have an unbiased view of the risks that too much testing can pose.
As far as nudging goes, she says, she wants patients to understand why she thinks something is important, and vice versa.
“I had a patient with diabetes who didn’t want insulin,” she says, “and when I finally asked why, she said, ‘As soon as my mother started it, she needed her foot amputated.’ Once I understood that she had conflated treatment with the course of untreated disease, our discussion became easier, and she did eventually change her mind. We need to empower patients to talk to doctors, and doctors really need to communicate with patients and listen to them.”
SDM tools can help patients cut through pervasive marketing and often erroneous messages about tests, procedures, devices, and medications. Keating and Barry both think that educating patients well in advance of a potentially worrying diagnosis could alleviate their stress and help them think more clearly when tough decisions need to be made.
But changing doctors’ ideas of how their relationship with patients should work can be a “tough nut to crack,” Keating says. Ten years ago, Barry adds, clinicians pushed back on SDM, saying patients would fare better if they were simply told what to do. Today, the problem is more logistical, with physicians arguing they don’t have time to educate every patient and involve them in decisions. But, as with OpenNotes, SDM uses decision aids—including brochures, pamphlets, websites, and, especially for low-literacy and low-health-literacy patients, videos—that let patients learn about their options between visits to the clinic.
SDM is not about reducing the rate of screenings or invasive treatments, Barry points out. “The dramatic geographic variations we see in treatments raise the question of what rate is right,” he says, “and studies about that are starting to show that SDM helps achieve the right rate. One study found that using decision aids reduced rates of some procedures in populations that were already pretty well-served with those procedures. Another, using the same decision-making tools with people who were underserved, found that the rates went up. So SDM is also a way of combating health disparities.”
“I had a patient with diabetes who didn’t want insulin and when I finally asked why, she said, ‘As soon as my mother started it, she needed her foot amputated.’ ”
Still, Barry says, many people who could benefit from shared decision making don’t get to take part in it. “There are many reasons for that,” he says. “Many clinicians still think it will take more time, and frankly, given that most health care values piecework, it may be economically advantageous to just do stuff rather than talk to people about why something may not be necessary.” Also, he adds, “paternalism dies hard.”
The right motivation
Traditional paternalism—the “we were gods, you were supplicants,” sentiment that Delbanco recalls was his mother’s conception of the doctor-patient relationship—does seem to be waning as patients inevitably become more involved in their own care through technology, from apps to implantable devices that can monitor everything from sleep quality to chronic conditions like congestive heart failure, as well as through consumer-driven websites and online forums that are building collective knowledge.
“We’re not going to get to where we need to be if we rely solely on the medical care system,” says Sara Singer, an adjunct professor of health care management and policy at the Harvard T.H. Chan School of Public Health and a professor of medicine and organizational behavior at Stanford University. “We need to integrate medicine with social services and other systems and sectors, including the corporate sector.”
Workplace wellness programs, offered by 80 percent of large U.S. employers, took a hit in April when a study in JAMA, coauthored by Zirui Song, MD ’10 PhD ’12, reported that a randomized clinical trial of nearly 33,000 employees working across the country for a single warehouse company found no significant differences in outcomes between employees who used the retailer’s wellness program and those who didn’t. But Singer, a lead researcher in the Culture of Health Program at the Harvard Chan School, a collaborative public health effort that aims to engage companies in consumer, employee, community, and environmental health, says part of the problem is the way certain wellness programs are run.
“It’s not helpful to provide free food, for example, so people don’t have to leave the building,” she says. “A lot of the quote-unquote wellness stuff we’re doing is designed to keep people producing at work. That’s not going to increase good health.”
Of course, it’s also possible that our knowledge about behavior modification is not yet refined enough to capture all the variables of human behavior. It’s well documented that social networks, including those among colleagues, can influence health, but incentives like yoga mats or spa gift certificates aren’t always as motivating. Penalties for unhealthy behaviors, like having to stand outside to smoke, work slightly better, but one of the best ways to inspire people seems to be having them put some skin in the game, betting their own money that they can meet a personal goal within a given time frame. That’s because “losing something makes you twice as miserable as gaining the same thing makes you happy,” according to Thaler and Sunstein.
“A lot of the quote-unquote wellness stuff we’re doing is designed to keep people producing at work. That’s not going to increase good health.”
Another way to achieve patients’ buy-in goes back to involving them more in clinical practice. Singer researches ways to transform health care delivery and has found that primary care and surgical teams that involve patients and their families have better patient outcomes than those that don’t.
“Focusing on the patient was the differentiating factor,” she says.
This kind of human-centered approach will have even larger implications as technology increases and genomics, artificial intelligence, big data, and other yet-unimagined advances play a bigger role in health care.
“There’s a great and present danger that as our knowledge expands and options mushroom individuals will feel overwhelmed. Guiding people through the growing morass will be quite a trick in the future,” says Delbanco. “But patients are far more resourceful than we health professionals give them credit for. Activating the patient in a healthy way and having true transparency join with expert consultants will get more complicated, but it’s also likely to bring increasing success.”
Elizabeth Gehrman is a Massachusetts-based writer.
Images: Mattias Paludi (top); John Soares (Barry and Keating).