Patients with rare diseases more likely to turn to Internet for support
Americans who have health issues are now using the Internet to expand their support networks to include online peers, especially if they have a rare disease, according to a new report by the Pew Internet Project and California HealthCare Foundation.
Peer-to-peer Healthcare by Susannah Fox, released Monday, finds that 18 percent of U.S. Internet users have gone online to find others who have experienced similar health issues. The figure jumps to 23 percent among Internet users who are living with chronic disease.
The report, which was based on a national telephone survey of 3,001 adults, additionally included insights from an online survey of 2,156 members of the National Organization for Rare Disorders (NORD), which shows the depth and breadth of what is made possible when patients and caregivers connect with each other online.
NORD represents the approximately 25 million Americans living with a rare disease, which is defined as affecting fewer than 200,000 people in the United States. The people who participated in the online survey reported a wide array of conditions, such as Marfan's Syndrome, congenital hyperinsulinism, and aplastic anemia, to name just a few.
People living with rare disease who responded to the survey far outpaced all other groups when it came to using peer networking. More than half of rare-disease respondents say they turned to family and friends. Another majority say they turned to others who have the same health condition.
"The Pew Internet Project's consistent finding – in politics, commerce, healthcare, and other sectors – is that the Internet provides people access not only to information, but also to other people who share their interests," says Fox, associate director of the Pew Internet Project. "Rare-disease patients' dispatches from the edge of medicine show an intensified form of networking among patients and caregivers. They search, they network, and, most importantly, they rely on our doctors as guides."
The report found that in general people rely on health professionals for advice about healthcare concerns. Only 5 percent of adults reported that they received online information, care, or support from a health professional, 13 percent said they had online contact with friends and family, and 5 percent say they interacted online with fellow patients.
Read the full report here.