White House Highlights Public-Private Partnership for Taking “Data to Knowledge to Action”

November 14, 2013

New partnership helps patients take ownership of their health records while helping with clinical research


Chapel Hill, NC - The national goal of building a Learning Health System, which may lower health costs and improve patient care for people in all areas of the country, will be enhanced through a collaboration of the School of Information and Library Science (SILS) at the University of North Carolina at Chapel Hill (UNC-CH), the Center for the Advancement of Health Information Technology at RTI International (RTI) and Our Health Data Cooperative (OHDC). The three organizations are responding to the Obama Administration’s call to harness the power of data by forging new partnerships around data innovation.

The Obama Administration highlights today a high-impact collaboration promoting “Data to Knowledge to Action.” The SILS, OHDC and RTI are planning to work together to develop the largest data set of anonymous health records for clinical research in the world, with a goal of including 50 Million member patient health records.

As part of the partnership, OHDC is a newly established cooperative, owned by patients, that has been developed to help patients better manage and benefit directly from the use of their health data while providing it anonymously for use in clinical research studies. Patients participating in the cooperative will have their health information collected anonymously using their OHDC “stock number.”  All collected data will be made available to health researchers and clinicians to help them “determine the best treatment options for each disease or condition.” Fees paid by subscribing health organizations to OHDC for access and use of the data for research purposes will be shared among the patients who submit their health information anonymously. The knowledge gained will benefit all.

“Our Health Data Cooperative expects to provide economic benefit to individuals who share their information with third parties,” said Tom Caruso, Ph.D., RTI Health Informatics Liaison with SILS at UNC-CH. “Compensation for the anonymous health records drive growth of a big data warehouse that can be used to provide improvements in personalized care,” said Dr. Caruso.

One of the goals of the collaboration of SILS at UNC-CH, CAHIT at RTI and ODHC is to help build and design database access, as well as the evidence-based educational infrastructure for members that will help them understand the research uses of their data. 

To the collaboration, funding of up to $12 million is being provided by Touchstone Energy Cooperative to enlist its more than 30 million existing members.  This funding will support a goal of enrolling 10 million members in the next 24 months.

Membership in OHDC is free and open to all United States residents. Those interested in participating may sign up for membership at http://www.ourhdc.com. Privacy is assured.

The School of Information and Library Science (SILS) at the University of North Carolina at Chapel Hill is one of the nation's top-ranked schools of library and information studies by U.S. News & World Report. SILS consistently takes a leadership role in today's ever-changing information and library science landscape.

Our Health Data Cooperative is a national patient owned cooperative that is committed to lowering the cost of health care for the United States and improving the health care for disparate patient groups by gathering health related data anonymously for each member via their individual cooperative stock number, which allows the data to stay in the patient’s doctor’s office.

The Center for the Advancement of Health IT (CAHIT) at RTI International uses evidence-based methods to encourage the use of health IT and eHealth in safe, appropriate ways. RTI's multidisciplinary teams of experts provide high-quality and innovative research and development, technical services, and policy analysis to governments and businesses worldwide.

For more information, contact
Wanda Monroe at 919/843-8337 or wmonroe@unc.edu