Many Americans turn to friends and family for support and advice when they have a health problem. Moreover, they now use the internet to expand their support networks to include online peers, particularly in the crucible of rare disease.
All told, 18% of U.S. internet users have gone online to find others who have experienced similar health issues. The figure jumps to 23% among internet users who are living with chronic disease.
Still, patients overwhelmingly report that health professionals are central to their healthcare experiences. When asked about the last time they had a health issue:
- 71% of adults in the U.S. say they received information, care, or support from a health professional.
- 55% of adults say they turned to friends and family.
- 21% of adults say they turned to others who have the same health condition.
These are some of the key findings in a new report from the Pew Internet Project and the California HealthCare Foundation called “Peer-to-peer Healthcare.” It is based on a national telephone survey of 3,001 adults which captures an estimate of how widespread this activity is in the U.S.
In addition, the report includes insights from an online survey of 2,156 members of the National Organization for Rare Disorders (NORD), which show the depth and breadth of what is made possible when patients and caregivers connect with each other online. The report is being released on Monday, February 28, in connection with Rare Disease Day, an international event to draw attention to the millions of people who live with “orphan” conditions.
“The Pew Internet Project’s consistent finding – in politics, commerce, health care, and other sectors – is that the internet provides people access not only to information, but also to other people who share their interests,” says Susannah Fox, associate director of the Pew Internet Project and author of the report. “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.”
As they reach out for support, people report that they use different sources to meet different needs. They generally rely on health professionals for advice about certain topics, such as diagnoses and prescription drugs, and they more often say they rely on friends, family, and fellow patients for emotional support about a health issue or everyday health tips.
The national survey shows that most health care conversations occur offline, but when a condition is rare, the internet is a lifeline since it can enable connections across distances and among people who may never have met in person. One adult living with a rare condition described how she connected with another patient online, bonded, and then enriched the friendship with in-person encounters: “The first time I met another patient, face to face, I sobbed. I was overjoyed and began to communicate with them on a regular basis and my network grew.”
This report is the result of collaboration between the Pew Internet Project and the California HealthCare Foundation.
The Pew Internet & American Life Project is an initiative of the Pew Research Center, a nonprofit “fact tank” that provides information on the issues, attitudes and trends shaping America and the world. The Project is nonpartisan and takes no position on policy issues. Support is provided by The Pew Charitable Trusts.
The California HealthCare Foundation is an independent philanthropy committed to improving the way health care is delivered and financed in California.