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People with Rare Diseases Look to Online Social Communities For Support

They still trust their provider the most, study says

According to a study published recently by the Pew Research Center’s Internet & American Life Project, patients and caregivers turn to the Internet not only for health information, but to connect with others like them. When it comes to technical concerns, patients still prefer to seek the advice of a professional, however.

The Internet has become a popular source of medical information and has facilitated patient access to social networking sites, blogs, online communities, and email groups and listservs. Previously, the Pew Project found that regardless of a patient’s activity on the Internet, health professionals continue to play a central role in their lives when it comes to illness and getting well. The authors of the current study wanted to investigate further by examining the growing presence of “peer-to-peer healthcare,” where patients rely on each other in the online world. They surveyed 3,001 Americans via telephone and used data from an online survey of 2,156 members of the National Organization for Rare Disorders (NORD), which represents 25 million Americans living with a disease that affects fewer than 200,000 people in the nation.

Overall, the authors found that 18 percent of Internet users have gone online to search for others with similar health concerns. People with less common, chronic health problems are more likely than users with no chronic conditions to do so (32 percent versus 15 percent). Users who have experienced a recent medical emergency or a significant change in physical health are also more likely to log on to find each other. Because the Internet allows for access to people all across the globe, new connections are forged that likely would not have been possible before. Rare disorders appear to amplify this trend, as previously isolated people can now find and communicate with others who understand. As one survey responder shared, “We can say things to each other we can't say to others. We joke about doctors and death. We cry when we need to. Together we are better informed. The support is powerful and empowering.”

Notably, the surveys revealed that despite many involved and meaningful online interactions — both support- and information-focused — patients still chose to consult with their physicians when in need. They did not appear to self-diagnose or self-medicate online. The Internet instead served as a valuable supplement to a physician’s care. In general, technical medical concerns were taken to the provider, while personal issues relating to coping and quick relief were shared online and with friends and family.

Source: Pew Research Center’s Internet & American Life Project. 2011. Peer-to-peer healthcare: many people — especially those living with chronic or rare diseases — use online connections to supplement professional medical advice. Published on February 28, 2011 on the Pew Research Center website.