Overview

Many Americans turn to friends and family for support and advice when they have a health problem. This report shows how people’s networks are expanding to include online peers, particularly in the crucible of rare disease.

The most striking finding of the national survey is the extent of peer-to-peer help among people living with chronic conditions. One in four internet users living with high blood pressure, diabetes, heart conditions, lung conditions, cancer, or some other chronic ailment (23%) say they have gone online to find others with similar health concerns. By contrast, 15% of internet users who report no chronic conditions have sought such help online.

When asked about the last time they had a health issue, however, 71% of adults in the U.S. say they received information, care, or support from a health professional. Fifty-five percent of adults say they turned to friends and family. Twenty-one percent of adults say they turned to others who have the same health condition. The oft-expressed fear that patients are using the internet to self-diagnose and self-medicate without reference to medical professionals does not emerge in national phone surveys or in this special rare-disease community survey.

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About the Survey

This report is based in part on a national telephone survey of 3,001 adults which captures an estimate of how widespread this activity is in the U.S. All numerical data included in the report is based on the telephone survey. The other part of the analysis is based on an online survey of 2,156 members of the National Organization for Rare Disorders (NORD) who wrote short essays about their use of the internet in caring for themselves or for their loved ones.

The national telephone survey interviews were conducted by Princeton Survey Research Associates International between August 9 and September 13, 2010, among a sample of 3,001 adults, age 18 and older. Interviews were conducted in English and Spanish. A combination of landline and cellular random digit dial (RDD) samples was used to represent all adults in the continental United States who have access to either a landline or cellular telephone. For results based on the total sample, one can say with 95% confidence that the error attributable to sampling is plus or minus 2.5 percentage points. For results based on internet users (n=2,065), the margin of sampling error is plus or minus 2.9 percentage points.

Note: A correction to the data has been posted.