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Some advocates say the Internet is the best starting point: a virtual gold mine of medical information. “Patients can learn a lot online,” says Torrey. “It’s just important that any information you find online is verifiable.” Research shows that many patients already take advantage of such opportunities. More than 80 percent of U.S. adults say they turn to the Internet as one of their first sources for medical information, according to a recent survey by the Pew Internet & American Life Project.
Patients today are going beyond basic Web research to interactive sites where they can seek advice and, in many cases, chat about their physical and emotional symptoms. For example, CureTogether (www.curetogether.com), a destination for patients to share medical information, has active online communities for more than 350 health conditions, and Diabetic Connect (www.diabeticconnect.com) boasts more than 35,000 registered users.
“The Internet is changing what people know about medicine, creating much more of a symmetry between patients and providers,” says Susannah Fox, researcher at the Pew Internet & American Life Project. “When people have a medical question and need an answer, the Internet allows them, in realtime, to quickly answer it. But it also allows them to dive deeply into a topic and get industrial strength information, instead of consumer strength— sometimes through their peers.”
Although the Internet provides a range of healthcare information to people in any area, it comes with caveats. “Using the Internet provides good information and bad information,” says Judy Swindle, manager of social services and patient advocacy at OSF St. Joseph Medical Center in Bloomington, Ill. “On the good side, patients have more knowledge about possible healthcare options. On the bad side, patients don’t always verify online sources. Anyone can call himself or herself a doctor and put up a Web site.”
Nevertheless, Swindle and her colleagues use the Internet and social media to inform patients. “We have computer stations at the hospital, where patients can access information,” Swindle says. “Over the past year, we have Twittered several surgeries—everything from brain surgery to a birth. Our purpose in doing the live Tweets is to focus on patient education. This way, if there are individuals that need the particular surgery, they might have a little insight as to what to expect. Our followers are from the community as well as all over the country.”
Engelen believes in further expanding the online options. “Healthcare providers need to inform patients about medical options in new ways, such as through social media,” he says. Although some experts might not like this approach, “it will be thrust upon us,” Engelen asserts. “As patients gain access to more information, whatever the source, the classical medical approach of ‘experts know what’s best for the patient’ will no longer work. We are stepping into an era of shared decision making, when physicians and patients will choose the best therapy together.”
When asked if today’s patients already take a more active role in their health, Swindle says, “I think so. People know they need to make informed decisions, and patients now are more knowledgeable of the benefits and burdens of a particular treatment or surgery.” For example, she describes a patient in his 80s who had been very active until he needed heart surgery. “At first, he declined it,” she recalls. “Then, he did some research on his options and the likely outcomes, and he changed his mind.” The patient opted for the surgery. “He’s doing well and is active again,” says Swindle.
Despite the impact of the Internet on empowering patients, more can be done. “The Internet era already changes what patients expect,” says Engelen. “They want healthcare that is available 24/7. Patients expect access to healthcare information that includes choices and options. So far—in my homeland, the Netherlands, at least—healthcare does not offer that option.”
In addition to finding information on treatments, patients can use technology to keep track of their medical records. According to Lenore Janecek, founder of Save the Patient (www.savethepatient.org), an advocacy organization dedicated to empowering patients, “We need to have a concerted effort to educate people, and make them aware of the fact that it’s their right to have this information at their fingertips.” Save the Patient is currently working with a technology company to develop flash drives the size of a key chain, on which patients can carry and access their personal health records.
In the meantime, patients do not feel in control of their records. “From the perspective of average patients,” says Engelen, “their healthcare has been taken away. Their data are being kept from them, and choices are being made for them.”
To gain more control of those choices, some consumers evaluate healthcare providers (mostly at sites like www.rateMDs.com), so that other patients can make informed decisions in selecting physicians. For example, Angie’s List (www.angieslist.com), which requires users to pay to access doctor ratings, has posted patient ratings of more than 6,000 physicians.
Patients and their advocates have an unprecedented amount of information sources available to them. The nature and degree of proactive engagement in treatment options among consumers can impact the regulatory, discovery and business aspects of health.
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