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

AAAS recieved a grant from the Agency for Healthcare Research and Quality (AHRQ) to study an emerging source of health-related data – online patient generated health registries. The project will examine such areas as how these registries are organized, their potential contributions to 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 - online patient-generated health registries. The registries are a potential source of data for use by scientists in medical and behavioral research.

Using multiple search strategies, the project identified a number of these registries; created a profile for each registry; characterized the registries on the basis of the data elements they contain; and described how scientists have used the registries in their research. Data collected will cover such matters as privacy and data confidentiality, types of information submitted by patients, policies regarding access to patient information, and so on. 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 was also 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.