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January 04, 2014 12:00 AM

Network will aid effectiveness studies

Dr. Joe Selby
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    Dr. Joe Selby is executive director of the Patient-Centered Outcomes Research Institute, Washington.

    Our healthcare system is in a decades-long transition to using electronic health records as a key support tool for providing higher-quality, more efficient medical care to individual patients. EHRs replace the paper chart and become a digital storehouse for information about treatment decisions and their consequences for large patient populations.

    With this transformation comes the opportunity to enhance the scope and efficiency of clinical research by leveraging the data. Conducting large studies in this way, however, has been hampered because databases reside in disparate systems with different owners and data standards.

    As a national, independent, not-for-profit funder of clinical comparative effectiveness research, the Patient-Centered Outcomes Research Institute is uniquely positioned to bring together existing and new data networks to address barriers to research and support efficient and effective observational and interventional studies. PCORI receives funding through a trust fund established by the Affordable Care Act.

    We have made an initial $93.5 million investment in this effort through PCORnet, our new National Patient-Centered Clinical Research Network, featuring 11 clinical data and 18 patient-powered networks, announced last month.

    The networks are representative of the nation's diverse healthcare delivery systems and include patients from all 50 states, more than 11 million in all.

    The networks are the foundation of our effort to support a learning U.S. healthcare system that can organize clinical data for large-scale comparative effectiveness studies. Health systems, clinicians and patients will play key roles in governing the network, ensuring it addresses questions that are important to patients and relevant in typical clinical settings.

    Once the network is fully connected, in about 18 months, it will support a variety of large-scale studies. Of greatest importance to PCORI are pragmatic clinical trials that are affordable and sufficiently large to examine subgroup differences in treatment effectiveness.

    Such studies will compare two or more alternatives for addressing prevention, diagnosis or treatment of a disease or condition; improving the management of patient populations at the healthcare system level; or eliminating health or healthcare disparities.

    By funding research today and building capacity for greater research tomorrow, we're using our investments in comparative effectiveness research to improve the volume and usability of information available to the healthcare community—and create a sustainable national research infrastructure.

    Dr. Joe Selby

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