Indiana patients take charge of their health care with patient empowerment
After experiencing troubling symptoms, Jennifer Green of Indianapolis logged on to her computer in search of answers.
The Angie’s List member says the information she discovered onlineconfirmed her suspicions — her dizziness, shortness of breath and rapid heart rate were all potentially dangerous side effects from her heart medication.
Worried, Green says she made an appointment with her cardiologist, Dr. Sandeep Joshi of the Care Group at Methodist Hospital in Indianapolis. But the 42-yearold says Joshi was dismissive and rude — telling her to get a life.
Citing confidentiality laws, Joshi says he can’t discuss specific patient information, but he’s sorry if he upset Green. “I do not say things like that, or use that language in front of patients,” he says.
Regardless, the experience prompted Green to give Joshi a negative grade on Angie’s List. “Not only did he not appreciate the fact that I tried to educate myself on the medicine, he didn’t appreciate me questioning what he prescribed,” Green says, adding she found a new cardiologist. “As an empowered patient, it’s my responsibility to ask my doctors questions. What I don’t know can hurt me.”
Becoming an empowered patient
More than 90 percent of Angie’s List members who took a recent online poll say they consider themselves to be empowered patients. Members feel like they’re in control of their health care by asking questions, researching health topics online, participating in treatment decisions, and understanding cost of care and insurance.
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, insurance company and even other patients experiencing similar issues.
But, like Green, 45 percent of members say they’ve also experienced a health care provider who they feel has prevented them from taking charge of their health. “I count on my doctors to take care of me,” Green says. “But every patient should also know their rights and their responsibilities.”
Dr. Richard Feldman, a highly rated family physician with St. Francis Hospital and Health Centers in Beech Grove, agrees and says in an ideal world, all patients would be working with a doctor who’s willing to sit down, look them in the eye, answer all their questions and spend the time to develop a relationship.
“Unfortunately, a lot of doctors are expected to see up to 40 patients a day, so they don’t have that luxury anymore,” he says. “Because of that, patients now have to understand the system, stand up for themselves and survive the complexities of medical care.”
Feldman says empowered patients advocate for themselves by being active and assertive participants in their health care, rather than inactive and passive bystanders.
“They eat healthy, exercise, use resources such as the Internet or the library to educate themselves, and ask questions,” he says, adding there is a difference between being empowered and overpowering. “If you view your doctor as your adversary, you’re blocking your own road to health. Being assertive is good, but being empowered is really about a spirit of cooperation and intelligent decision making.”
An well-established trend
While the idea of patient empowerment may be popular today, the concept itself started more than 30 years ago, says Richard Frankel, a professor of medicine at Indiana University. “Then, there was more focus on cure and technological solutions,” he says. “With that came a father-knows-best approach, but in the modern era, patients not only want doctors that care about them, they also want doctors that relate to them.”
Frankel, a research scientist who focuses on improving health care, was the lead author of a 2010 review that examined 35 years’ worth of medical studies relating to the doctor-patient relationship. He says patient empowerment was born from the research, which suggested that the most successful doctor-patient relationships were ones where the patient felt comfortable enough to participate in their health 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 report by the Institute of Medicine in 2001 also reached a similar conclusion.
The medical community is aware of the need for change, but has been slow to do it, says Frankel. “Doctors learn a style of communication that’s more like interrogating — you know, ‘yes-no’ questions,” he says. “It’s a little like being in the courtroom.”
One of Frankel’s jobs is teaching medical students, and physicians, how to build better patient partnerships by learning how to communicate more effectively through open-ended questions.
Communication and cooperation were key for Tish Lashua. After moving to Indianapolis in 2005, Lashua, who considers herself to be an empowered patient, says she chose her internist, highly rated Dr. Kristi Dickson of Northeast Medical Group in McCordsville, based on Dickson’s board certification, Angie’s List reviews praising her bedside manner, and her personal philosophy that patients should be treated as partners.
“That was important to me because I know my body better than anyone else,” Lashua says, adding she also appreciates that Dickson explains her thought process aloud in layman’s terms, asks for feedback and is open to suggestions. “They may know more than me, but doctors are humans, too. Despite their extensive education, it’s totally possible they may miss something.”
Health care cost decisions aid empowerment
Lashua says she also considers herself to be empowered because she cares about health care costs, like almost 20 percent of members polled. She says she cares in part because she has a high-deductible insurance plan with a health savings account and is the mother of four.
“I don’t want to spend $80 on a prescription that I may not need,” she says, adding she has candid conversations with Dickson about what’s absolutely necessary and what’s just recommended.
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.
“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 Indianapolis-based WellPoint are making it easier than ever by helping patients schedule appointments, and offering cash rebates for procedures done at cost-effective medical facilities.
Dickson, who makes a point to discuss medication, treatment and procedure costs with her patients, says both patients and doctors need to be aware of cost — as it not only impacts their relationship, but it also impacts the patient outcome.
“If [recommended treatment] is too pricey, don’t be afraid to speak up and tell your doctor,” Dickson says. “Your doctor should always be willing to discuss alternatives with you because you’re less likely to comply with your doctor’s orders if it’s not in the budget.”
While being a partner in your health means being honest and open about a treatment plan, experts say that doesn’t mean being inactive or complacent. Dr. Erin Newton, a highly rated oncologist and medical director at IU Simon Cancer Center in Indianapolis, says she’s most challenged by patients who only want to be told what to do.
“Medicine, especially oncology, is not one-size-fits-all,” she says, adding many empowered patients also make use of support groups and support staff, such as nurses or physician assistants, to enhance their care. “I’d rather patients partner with me to figure out the best solution for them.”
Angie’s List member Jim Brothers of Indianapolis says after nearly two decades of suffering from ulcerative colitis, and feeling disconnected from his physicians, he decided to take responsibility for his own health. The 64-year-old says he interviewed four doctors to find the best fit to perform surgery for his colitis. “It was empowering,” Brothers says.
He chose Dr. Olaf Johansen, a highly rated colorectal surgeon with Kendrick Regional Center in Mooresville, after Johansen spent more than an hour answering questions, explaining the process and making him feel comfortable. “As I’ve gotten older and after going through this process, I realized that sort of relationship shouldn’t be the exception — but it should be what you expect from a doctor,” he says.
Time is of the essence
However, experts say not every doctor has an hour to spend with patients. Dickson says each patient is typically given a 15-minute appointment, but increased documentation requirements cut into the time. “I often spend the full amount of time with the patient, but then the paperwork backs up at the end of the day,” she says. “It can become overwhelming.”
According to a recent online poll, 80 percent of respondents 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.
So to ensure you get the most out of your appointment, experts recommend trying to make your appointment first-thing in the morning, before the doctor has the chance of falling behind schedule, and creating a prioritized list of questions and concerns.
“The worst thing you can do is to come in with a laundry list,” Feldman says. “Your doctor won’t be able to get to all of it, so determine the top five that are most important.”
Highly rated family medicine doctor Jeffrey Gladd of Fort Wayne, who blogs about patient empowerment, opened his own practice after being discouraged with the lack of time he could give patients in a traditional setting. “When you don’t have much time, a lot of things can get missed,” he says. “There were a lot of labs that didn’t get combed over completely — or the patient wasn’t 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 patient safety.
“It will allow patients to access their lab results directly, instead of relying on getting it from 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 certifi ed with no disciplinary actions.
While information availability may be an integral aspect of safety and empowerment, Frankel says it’s only useful if it’s retained. “The average patient recalls only 50 percent of what they’ve been told,” he says. “In the case that the patient receives bad news, it drops to 15 percent.”
Experts suggest bringing a friend or family member to your appointments. “It’s a good idea to have a pair of extra eyes and ears,” Frankel says, adding it’s also wise to repeat back what your doctor says or record the conversation.
Angie’s List member Jo Brooks says she and her husband, Greg, advocate for one another by making their appointments with highly rated Dr. Young Park of Westview Center Integrated Medicine in Indianapolis at the same time. “It’s worked out very well for us,” Jo says, adding they drive from West Lafayette to see Park, who was willing to naturally manage her high blood pressure and cholesterol, and her husband’s diabetes.
“We consider ourselves to be very empowered,” she says. “And we’re pretty much fed up with doctors copping an attitude like only they can make decisions about our health.”