March 24, 2010

Chronic Disease and the Internet

Acknowledgements

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. Lee Rainie, Aaron Smith, and Kathryn Zickuhr provided editorial guidance and support throughout this project.

The California HealthCare Foundation is an independent philanthropy committed to improving the way health care is delivered and financed in California. Veenu Aulakh seeded and nurtured this research project, including an upcoming California-only report.

All quantitative, numerical data is based on a December 2008 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. Evans Witt and Jennifer Su guided the quantitative research, overseeing interviews of 2,253 respondents, age 18 and older, in both English and Spanish, including 502 cell phone interviews.

All stories and quotes from consumers are based on qualitative surveys fielded in the summer and fall of 2009 on PatientsLikeMe and HealthCentral.

PatientsLikeMe is a free online community for patients with life-changing conditions to monitor and share the course of their disease.  While patients interact to help improve their outcomes, the data they provide helps researchers, doctors and industry learn how these diseases act in the real world. Paul Wicks and Michael Massagli adapted and fielded a series of questions to a sample of members drawn from the Fibromyalgia, HIV, and Mood Disorders communities for a total of 258 completed surveys.

HealthCentral is a collection of condition and wellness websites providing clinical information, tools, and mobile applications. The sites provide a platform for over 3,000 bloggers, 200 expert patients, and millions of people sharing real-life experiences about specific conditions such as diabetes, asthma, and heart disease. Ted Smith and his patient analytics team adapted and fielded a series of questions to a sample of HealthCentral’s audience for a total of 996 completed surveys.

In addition, Jane Sarasohn-Kahn, Gilles Frydman, and “E-patient Dave” deBronkart provided peer review comments before publication.

The authors would especially like to thank all the people who took the time to respond either to the telephone or the online surveys. Your responses are a gift and deeply affected our understanding of what life is like with chronic disease.