Joining Patient Education and Advocacy with Patient-Centered Research
AR-PoWER is a patient-powered research network that aims to help give people living with arthritis the answers they need to receive better care and manage their conditions more effectively.
It’s one of 34 health data networks joining forces to advance PCORnet, the National Patient-Centered Clinical Research Network. This national resource will change patients’ and their families’ lives by significantly increasing the speed and efficiency of the clinical research that provides useful new information to support our healthcare decisions.
AR-PoWER’s origins date back to 1999 when then 18-year-old Seth Ginsberg began work from his college dorm bunk bed on a website to provide education and community support for individuals with arthritis – people like him.
Having managed his own form of arthritis called undifferential spondylarthropathy, Seth felt a personal need for insight and community connection, a need, it turns out, that’s shared by tens of thousands of others with similar conditions as well as their families. Seth’s initial web-based gathering place became CreakyJoints.org.
CreakyJoints grew to become a vibrant, active arthritis support community with more than 55,000 members who share information about their conditions to promote education and advocacy. It is now part of Global Healthy Living Foundation, a larger patient advocacy organization.
Along the way, Ginsberg came to know and admire arthritis specialist Dr. Jeffrey Curtis of the University of Alabama at Birmingham (UAB).
He respected Curtis’s technology prowess on top of his clinical expertise. The admiration was mutual and led to the idea of adding research to the CreakyJoints membership’s education and advocacy efforts.
From CreakyJoints to AR-PoWER
Global Healthy Living Foundation and UAB are now expanding their partnership to realize the potential of AR-PoWER to improve the lives of people seeking evidence to help them make the best decisions about their care.
Through individual health data networks such as AR-PoWER, PCORnet will enable us to tap into the collection of health information during routine patient activities and healthcare delivery so that we can learn directly from patients’ “real-world” experiences what works best and more rapidly and efficiently answer patients’ most pressing questions.
Moreover, by combining the knowledge and insights of patients, healthcare providers, health systems, and researchers in a revolutionary network with carefully controlled access to rich sources of health data, PCORnet will enable us to respond to patient’s priorities and speed the creation of new knowledge to guide treatment on a national scale.
Posted: December 14, 2014; Updated July 21, 2015