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.
All quantitative, numerical data is based on a September 2010 national telephone survey conducted by Princeton Survey Research Associates International (PSRAI).
PSRAI is an independent firm dedicated to high-quality research providing reliable, valid results for clients in the United States and around the world.
All qualitative data, including the stories and insights provided by caregivers and patients, is based on an online survey of members of the National Organization of Rare Disorders (NORD) in December 2010.
NORD is a non-profit organization dedicated to improving the lives of all patients and families affected by rare diseases through advocacy, education, research, and patient services. NORD sent invitations to a sample of their membership which resulted in 2,156 completed online responses to 14 questions about how they navigate the shoals of living with rare conditions.
I am deeply grateful to the respondents of both the telephone survey and the online survey, all of whom contributed to my understanding of the role of the internet in the new health care landscape. This is the first of a series of analyses planned for these combined data sets.