AAAS Scientific Responsibility, Human Rights and Law Program

Social Networking and Online Health Communities:
Identifying and Describing Patient-Generated Registries

AAAS has recieved a grant from the Agency for Healthcare Research and Quality (AHRQ) to study an emerging source of health-related data - patient generated health registries. The project will open up a new field of inquiry, examining such areas as how these registries are organized, their value in medical research, and related ethical and policy issues.

About the Project

The use of registries as an adjunct or alternative to randomized controlled trials in medical research, coinciding with the rapid growth of social networking, has produced a burgeoning phenomenon - patient-generated health registries. Increasingly these registries are being used in medical research. In some, participants are indicating their willingness to be enrolled in clinical trials or other research studies; in others, it is the information in the registries that is the data used by scientists in medical and behavioral research. This project will include both types of databases.

The project will identify as many of these registries as possible, using multiple search strategies; create a profile of each registry, using information provided on their websites, as well as from interviews with self-identified organizers of the patient communities; characterize the registries on the basis of the data elements they contain, as well as information about the registries' privacy, confidentiality, and data management policies; and describe how scientists have used the registries in their research. The data from the registry profiles will be aggregated and a report prepared describing the project's findings and conclusions. Some of the data generated from this project will also be integrated with AHRQ's Registry of Patient Registries (RoPR) project.

Advisory Committee

• Leonard D'Avolio, PhD., Associate Center Director, Biomedical Informatics, Massachusetts Veterans Epidemiology Research and Information Center, and Harvard Medical School

• Gunther Eysenbach, M.D., Senior Scientist, Center for Global eHealth Innovation, Toronto General Research Institute of the UHN and Professor, University of Toronto

• Rebecca Klemm, Ph.D., Klemm Analysis Group

• Michael Manganiello, MPA, Partner, HCM Strategists

• Farris Timimi, M.D., Medical Director, Mayo Clinic Center for Social Media

• Paul Wicks, Ph.D., Director of Research and Development, PatientsLikeMe

This project is supported by grant number R03HS021371 from the Agency for Healthcare Research and Quality.

(page updated 11/19/2012)