Access to online health care information is growing, as is patients' interest in taking an active role in their medical care. However, progress toward doctors and patients working together to plan treatment may not be moving quite as fast. Many patients, it seems, avoid asking questions or sharing information they have found online for fear of angering their physicians.
"People are reluctant to do anything that might challenge their physician's authority. Part of that is they've had negative experiences when they've done that. Part of that may be ... that you don't challenge a person upon whose good will you're dependent," Jessie Gruman, president of the Center for Advancing Health, said.
A recent study published in Health Affairs found that despite people expressing a strong interest in discussing treatment options with their doctor, they frequently felt shut down by doctors who often acted in an authoritarian manner.
Researchers conducted six focus groups with 48 people in the San Francisco Bay Area. Participants were mostly over age 50, highly educated and lived in affluent areas.
They described feeling compelled to "conform to socially sanctioned roles and defer to physicians during clinical consultations," according to the study. There also was fear about being labeled as "difficult" and wanting to be perceived as a "good patient." Some were afraid of retribution if they were to challenge their physician by questioning his or her advice or recommendations.
"You're worried ... you're going to piss the doctor off, ... [that] it's going to change the relationship ... I don't want to rock the boat," said a 49-year-old male study participant.
Dominick Frosch -- the study's lead author and an associate investigator with the Department of Health Services Research at Palo Alto Medical Foundation Research Institute -- said he was a little surprised by the study's findings, given the population studied. He said, "If these folks are experiencing this, it's difficult to imagine that people from less-privileged positions would find it easier."
Study participants said they protected their relationships with their doctors by conducting their own independent research about their medical conditions, in some cases, covertly, so as to not "rock the boat."
"The Internet helps them satisfy a hunger for information. It helps them do research they think they're not getting from their doctors," Frosch said.
Patients' and Doctors' Perceptions May Differ
A second recently published study suggests that the intention behind patients wanting to discuss information they found online with their physicians may be entirely different than how they feel it will be perceived by their doctors.
The study published in the Journal of Applied Communication Research found that cancer patients wanted to talk with their doctors about information they found online and their primary goal in doing so was to get advice and insight about what they found and to better assess their treatment options. The goal was not to challenge or influence their doctors.
"I was not surprised that patients were not testing their doctors as much as maybe doctors sometimes think that they are," Christina Sabee, the study's author and an assistant professor of Communication Studies at San Francisco State University, said.
Of the 145 cancer patients participating in the study, 37% talked with their doctor about information they found online to learn more about their condition or the recommended treatment, 19% wanted their doctor's opinion and 10% were interested in verifying the accuracy of information they found online. Only 13% brought in information to test their doctor's knowledge.
People are just curious about what's going on, Sabee said. "But if you don't frame the question in the right way people think you're questioning their ability, and doctors are in a very precarious position, especially in cancer. We know a lot about cancer, but we don't know everything," she said.
No doctor can expect to know everything and should accept whatever help patients are willing to offer with their own research, according to Howard Luks -- a New York-based orthopedist who is active in social media and populates his website with evidence-based medical information.
"Thousands of papers are published every day. Every day I don't read 1,000 articles. I'm behind," Luks said. "A doctor cannot know everything about their field, and they need to be willing to accept that help. You have to leave your ego at the door and be willing to engage patients and dive deeper into information," he said.
Active Online and in the Doctor's Office
A 2011 Pew Internet and American Life report, titled "The Social Life of Health Information," found that of the 74% of adults who use the Internet, 80% have looked online for health information specific to a disease or treatment. And 85% of Internet users who experienced a medical crisis went online for health information.
And the use of social networking sites is growing, according to the study. The study found that 15% of people using social networking sites say they do so in order to get health information, up slightly from 11% in 2008.
Offline as well, patients want to be actively involved in their care. A 2011 literature review published in the journal Patient Education and Counseling examined 115 studies conducted between 1980 and 2000 that measured patient decision role preferences. It found that in 63% of the studies, the majority of respondents wanted to participate in decisions about their care. That dynamic increased over time -- studies conducted after 2000 showed that 71% of respondents preferred sharing decision roles.
Moreover, there's indication that greater patient involvement might reduce unwarranted treatments and improve medical outcomes, Frosch said. He cites a number of studies in which patients with chronic diseases who engaged in shared decision-making with their physician showed better outcomes, better adherence to their treatment regimen and lower health care costs. Similarly, studies have consistently found that patients who engaged in shared decision-making around issues such as whether or not to have surgery for early stage prostate cancer make more informed choices.
"Let's put it this way: It's about much more than just having pleasant conversation. It matters a great deal for care and the outcomes that result from that," Frosch said of shared decision-making.
Many efforts have been made over the years to make health care delivery more patient-friendly and to encourage shared decision-making whereby patients and doctors work collaboratively, incorporating the best available scientific evidence with a patient's preferences and values.
Shared decision-making also was written into the Affordable Care Act, which includes a number of provisions to arm patients with more information about available treatment options, and to tailor treatment to each patient's beliefs, preferences and life circumstances.
Still, said Frosch, we have a long way to go to reach the ideal of true partnership between doctors and patients. "We see that support and endorsement of the approach has been largely rhetorical," he said.
There still are deep-seeded barriers blocking a genuine partnership between doctors and patients, according to Frosch.
Online Information Helping Doctors and Patients Alike
Among the more common complaints both patients and doctors have about today's medical consultations is that they're short on time. That might account in part for patients' tendency to turn to the Internet.
"Doctors don't have a lot of time to spend with patients anymore and so patients are going online and looking for information," Sabee said.
According to Luks, however, when doctors take an active role in developing an online presence and making evidence-based information widely available to patients online, they not only improve patient care, but they also can improve their own medical practice.
"That is one of the key returns on investments that I've realized from having a deep digital presence and information available online," Luks said. "It's much more effective and efficient and it's actually a faster visit, and yet the patient is better educated and more comfortable," he said.