12:35 - 12:55 pmSaturday, September 28
LK 130
Engaging patient & families through online patient-powered research networks
LK 130
Engaging patient & families through online patient-powered research networks
Principal Communication Researcher and Evaluator
Online Patient-Powered Research Networks are quickly evolving as a tool for patient support organizations to create their own data for research. From collaborative multi-condition sites like "Patients... Read more

Description

Online Patient-Powered Research Networks are quickly evolving as a tool for patient support organizations to create their own data for research. From collaborative multi-condition sites like "Patients Like Me" and "Registry for All" to smaller sites designed for a specific condition by a single organization, patient-powered research networks enable patients, caregivers, and families to take an active role in research on a condition using patient-reported outcomes.  Yet the practice is fraught with barriers, challenges, and potential problems.  This presentation provides a summary assessment of this emerging area of patient-driven IT based  on a white paper comissioned by the Agency for Healthcare Research and Quality. A technical expert panel of those at the center of the practice guided the development of the content. The presentation will discuss the concept of patient-powered research through online networks, the current pathways being forged in the field, and the advantages and disadvantages of each. The goal of the presentation is to introduce a new aspect of e-health and explore with the group its potential for impacting patient-centered outcomes research.

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