Empowered patients receive the best health care
by Matthew Brady and Jackie Norris
Andrea Low wanted her son, Athen, to be born in water at a nontraditional birthing center. Circumstances — including premature labor — and decisions made by others forced her into an emergency cesarean section at a traditional hospital. "I didn't get the birth I wanted. In fact, it was the polar opposite," says the Beaverton, Ore., Angie's List member.
Ten years later, she says she got another chance when she became pregnant with her second child, daughter Ari. "I knew what I wanted, and I wasn't going to settle," she says.
After asking friends for referrals and looking at health blogs and online doctor reviews, she found Dr. Carol Suzuki, a highly rated ob-gyn with Bridgeview Women's Health in Portland, Ore. "I could finally have the birth I wanted," Low says, adding Suzuki made her feel comfortable to ask questions, share her preferences and spend ample time discussing options. "She empowered me."
More than 90 percent of Angie's List members who took a recent online poll say they, too, consider themselves to be empowered patients. Members feel like they're in control of their health by asking doctors questions, researching health topics online, actively participating in treatment decisions and understanding costs of care.
Empowered patients also tell their provider the truth about their health, learn how to avoid unsafe health care environments, know their family medical history and become a partner with their health care team — including doctors and their staff, their insurance company and even other patients experiencing similar issues.
Suzuki says patients like Low represent a nationwide shift in the doctor-patient relationship. "The pendulum has swung," Suzuki says, adding patients previously took their doctor's word as gospel. "Now people have educated themselves. They come to their appointments with questions, and they expect a doctor to develop a partnership."
Highly rated Dr. Matthew Sorrentino with the University of Chicago Medical Center agrees. "When I started my training over 30 years ago, there was a more paternalistic feel to medicine — ?the physician knows best," the Chicago physician says. "At that time, many patients wanted to be told what to do." Now, he says his patients are more engaged.
While the idea of patient empowerment may be popular today, the concept itself isn't new, says Richard Frankel, a research scientist with the Regenstrief Institute — an Indianapolis-based foundation dedicated to improving health care in the U.S. In a 2010 review, he examined 35 years worth of medical studies relating to the doctor-patient relationship and ?says patient empowerment was born from this early research.
The information, Frankel says, suggests the most successful doctor-patient relationships were ones where the patient felt comfortable enough to participate in their own care. "There was a series of studies done in the 1980s where patients were asked to be more assertive," he says. "It was found that those who ask more questions have better outcomes." A landmark 2001 report by the Institute of Medicine reached a similar conclusion.
And although the medical community is aware of the need for change, Frankel says, they've been slow to do it. "Doctors learn a style of communication that's more like interrogating — you know, 'yes-no' questions," he says, and by teaching them how to communicate more effectively, they learn to build better patient relationships.
Wendy Thomas of Seattle says she's inquisitive by nature, so when the 59-year-old's internist, highly rated Dr. Steven Hayashi, wanted to put her on a statin for high cholesterol, she asked if she could try diet and exercise first. "I really just needed to get my act together," she says and was happy Hayashi discussed alternatives with her. "He wasn't offended I had another road in mind, and three months later my cholesterol was back to normal."
Hayashi says he prefers patients who take responsibility for their health. "The best thing you can do to take ownership is to ask questions," Hayashi says. "We can start our conversations at a higher level [of understanding], which allows us to spend time covering specifics."
However, Wendy's husband, John, says he rarely asks questions. "I'm a believer until somebody screws me around," says the 79-year-old Angie's List member. John takes nine prescriptions each day, for conditions such as arthritis, heart disease and asthma. "I don't know what they all do," he admits.
Frankel says the average patient recalls only 50 percent of what they've been told during a medical appointment and only 15 percent when it's bad news. He suggests bringing someone with you or recording the conversation.
Because of John's trusting nature, Wendy says she acts as an advocate — tagging along to his appointments to ask questions. While the majority of John's physicians are happy to answer them, Wendy says some seem to push back, or not address the questions fully.
Forty-five percent of members polled say they've been to a health care provider who they feel has prevented them from taking charge of their health. "I want a doctor to give me all of the treatment possibilities, along with the pros and cons of each," Wendy says. "I want to be a part of [the decision making]."
Sorrentino says it's not uncommon for patients to reject his first treatment recommendation, particularly if it involves surgery. But, rather than bully or scare them, he presents the options, explains the potential ramifications of their choice, and then helps them pursue those options. As the assistant director of the Bucksbaum Institute for Clinical Excellence, which is dedicated to enhancing communication between physicians and patients, he's researching ways to keep medicine patient-focused. "Many times there's more than one treatment plan that's acceptable as long as the patient is aware of the risks and benefits," says Sorrentino, who suggests empowered patients utilize support staff, such as nurses, physician assistants or dietitians, to enhance their care.
Dave deBronkart of Nashua, N.H., considers himself to be an empowered patient because he’s an active participant in his health, and like almost 20 percent of polled members, he also cares about ?health care costs.
The cancer survivor and co-chairman of the Society for Participatory Medicine — a nonprofit that promotes patient empowerment — says he’s selective in his cost-saving efforts, driving past 20 hospitals to go to his top-notch oncologist. But for routine procedures, such as CT scans, he shops around to save money. “A CT scan is just an image, so I don’t have to get it at my hospital,” deBronkart says, adding getting pricing information is notoriously difficult. “We wonder why costs keep going up? Maybe it’s because nobody can see the price tags.”
Alwyn Cassil, director of public affairs for the Center for Studying Health System Change, a nonpartisan group that conducts health policy research, says it’s important for patients to care about what they spend as it directly affects the price of health insurance premiums and the cost of health care overall. “If consumers shop around, they can play a role in ensuring we get the best value for what we spend,” Cassil says, adding some insurance companies such as WellPoint are making it easier by helping patients schedule appointments, and offering cash rebates, for procedures done at cost-effective facilities.
Experts also say numerous efforts are under way to improve medical pricing transparency. Insurers including WellPoint, Cigna, Aetna and UnitedHealthcare continue to expand online cost-comparison tools to include more procedures for their customers.
Whether it’s pricing or symptom tracking, it’s important for doctors to not be dismissive when a patient arrives armed with Internet research, says highly rated endocrinologist Dr. Pamela Hartzband of highly rated Beth Israel Deaconess Medical Center in Boston. “There’s no right answer for everyone,” ?says Hartzband, the co-author of a book she wrote with her husband, oncologist Dr. Jerome Groopman, on patient empowerment. “Medicine is a gray zone, so part of the doctor’s role is to serve as a guide that helps patients sort through information.”
Stacey Scerbo of Cape Coral, Fla., says her job as a database analyst translates to how she manages her health care. “I analyze everything,” she says. The Angie’s List member recently moved to Florida from New England, where she had assembled a team of doctors she trusted. “Now I have to find another group, so I use Angie’s List and other online resources.”
Scerbo says she doesn’t want to overpower her doctor, she just wants to have input. “I expect my doctor to take the lead,” she says. “I didn’t go to medical school and don’t profess to know everything. But I want to be able to ask questions, and I want them to take the time to answer them.”
Unfortunately, not every doctor has a lot of time to spend with their patients — making the physician’s time constraints a big obstacle. “A lot of doctors may only have 10- or 15-minute appointment slots,” Suzuki says. “But it takes more ?time than that to be thorough.”
According to a recent online poll, 80 percent of members report waiting 45 minutes to an hour for their appointment — and 34 percent say the long wait makes them less likely to ask their physician questions. To ensure you get the most out of your appointment, experts suggest scheduling early in the morning, before the doctor has the chance of falling behind.
Dr. Jeffrey Gladd, a highly rated family medicine doctor in Fort Wayne, Ind., who blogs about patient empowerment, says he opened his own practice after becoming discouraged with the lack of time he could give his patients in the traditional health care system. “After waiting 40 minutes, the patients got seven minutes with me,” he says. “When you don’t have much time, a lot of things can get missed. There were an awful lot of labs that didn’t get combed over completely — or the patient wasn’t even notified of the results.”
But, Gladd says a new rule proposed in September by the U.S. Department of Health and Human Services will further the efforts of patient empowerment and safety. “It will allow patients to access ?their lab results directly, instead ?of relying on their doctor,” he says, adding it’s also essential for patients to regularly review their medical records for accuracy. Experts also suggest making sure your doctor ?is properly licensed and board certified with no disciplinary actions. “Access to information is a key component of empowerment,” Gladd says.
If your physician isn’t sharing information, spending enough time, or allowing you to be a partner in your care, Suzuki recommends moving on. “You’re less likely to follow their treatments, so it’s crucial that you find a doctor you connect with and trust,” she says.
Angie’s List member Margo Gorra-Stockman of Alexandria, ?Va., says she decided to find another health care provider 10 years ago when she was living in Boston. She says her doctor repeatedly prescribed medications for symptoms of an autoimmune disorder and ignored her complaints that those medicines weren’t working. When prescription steroids caused acne, Gorra-Stockman says he tried to send her to a dermatologist; when she reacted to other prescriptions, he tried to send her to an allergist. Feeling like he was treating symptoms rather than the cause, she dropped the doctor and started researching her symptoms online and in books.
She eventually found Boston family medicine specialist Dr. Mark Hyman who, Gorra-Stockman says, listened to her and diagnosed her with having high mercury levels in her bloodstream. Since moving, she’s also found new doctors who’ve become partners in her health. “I no longer tolerate doctors who are condescending,” she says. “Once you become an empowered patient, you never look back or go back to how you were before.”