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People in the United States with chronic conditions or rare diseases are turning to family, friends and other patients online for support, but when seeking advice from health professionals they’re staying mostly offline, according to a report by the Pew Internet & American Life Project nonprofit research firm.
Although 23 percent of Internet users suffering from a chronic condition such as high blood pressure, diabetes or cancer go online to communicate with peers about their condition, only 5 percent received care or information from a health professional online.
Of the subjects in the survey, 70 percent still seek help from health professionals, though mostly offline, and 91 percent of U.S. adults find doctors and nurses more helpful than sources such as friends and family.
Meanwhile, 15 percent of Internet users without a chronic condition went online for health advice.
“What we wanted to do with this survey was hopefully knock down once and for all the idea that the Internet is a replacement for health professionals-it is not,” Susannah Fox, associate director for digital strategy at the Pew Internet & American Life Project, told eWEEK.
“People still want to turn to a health professional for the technical part of health care, and that includes a medical diagnosis, recommendations about treatments such as prescription drugs [and] recommendation for a doctor specialist or a hospital. Those sorts of things are still very much in the domain of health professionals.”
Web users communicate with peers using social networking sites, blogs, e-mail and list servers, Pew reports.
“What this survey shows is that people want to connect with peer resources like fellow patients, friends and family on other issues that have to do with health, which are very important to them, like emotional support or a quick remedy for an everyday health issue,” Fox said.
The Internet is also a tool for those suffering from rare disorders, Fox said, noting that these patients are able to find people in other cities or countries who may be suffering from the same condition.
“We suspected that the Internet was especially important for people living with rare disorders basically because they are unlikely to know anybody in their own offline social network who shares the same condition,” Fox said.
The report described how a mother of a small child suffering from a rare disease found support online: “When a disease is so rare and there are no folks in your town, and a few in your state who are going through what you’re going through, you need a support group that encompasses people from all over the world,” the mother said.
“We’ve seen in previous work that people want to connect with people who share their same condition,” Fox said. “This is the first time we’ve been able to lock it down and see how prevalent is this in the general population.”
For the study, Pew interviewed 3,001 people in the United States over the telephone and 2,156 members of the NORD (National Organization for Rare Disorders) online.
The Pew report, released on Feb. 28, discussed a parallel track between those using Internet tools such as social media to connect with others for political purposes and people who seek health advice online.
“Where people gather together toward a political end, people are also gathering together online for better health outcomes,” Fox said.
This report could serve as a “reality check” that patients aren’t getting health information online as much as we would think, according to Fox.
“Even as we move into this era where so much communication is happening online and as we move into an era in which electronic health records are going to become more common, at this point it’s still unusual to communicate online with a doctor or health care professional. It’s even unusual to communicate about health with friends and family or fellow patients,” Fox said.