1. Putting the Patient at the Center of Health Care Research Joe Selby, MD, MPH Executive Director, Patient-Centered Outcomes Research Institute The Conference of Montreal 11 June 2014

2. “The purpose of the Institute is to assist patients, clinicians, purchasers, and policy-makers in making informed health decisions by advancing the quality and relevance of evidence concerning the manner in which diseases, disorders, and other health conditions can effectively and appropriately be prevented, diagnosed, treated, monitored, and managed through research and evidence synthesis...and the dissemination of research findings with respect to the relative health outcomes, clinical effectiveness, and appropriateness of the medical treatments, services...” — from Patient Protection and Affordable Care Act PCORI was Created in the Affordable Care Act, 2010

3. Why PCORI? Research tends not to address many of the practical questions faced by patients, caregivers and clinicians People often need to know which treatment is better for them, given their characteristics and their personal preferences This kind of research is best done in “real world” settings 3

4. We Emphasize Engagement as a Path to Practical, Useful Research

5. The 1990s: the Services/Knowledge Industries Look Toward Being “Customer-Centric” Creating a Customer-Centric Culture: Leadership in Quality, Innovation, and Speed — Robin L. Lawton, 1993

6. The Trend Broadens10 Years Later… Building a Customer-Centric Organization 9 out of 10 CEOs say they are strengthening customer and client engagement programs. — PriceWaterhouseCoopers Survey, 2013

7. Source: Beyond Philosophy The Path to a Customer-Centric Organization

8. Introducing PCORnet: The National Patient-Centered Clinical Research Network

9. PCORNet: The Patient-Centered Clinical Research Network A collaborative array of health data networks, some based within large health systems and others in patient groups, many of which are focused on rare diseases Seeks to improve the nation’s capacity to conduct clinical research more efficiently, by creating a large, highly representative platform with a focus on conducting outcomes research – both randomized and observational. Aims to support a learning US healthcare system, which would allow large-scale research to be conducted with enhanced accuracy and efficiency within real-world care delivery systems.

10. 11 CDRN and 18 PPRN awards were approved December 17, 2013 by PCORI’s Board of Governors 10 This map depicts the number of PCORI-funded Patient-Powered or Clinical Data Research Networks that have coverage in each state.

11. PCORnet: Infrastructure for a Learning Health System

12. www.pcori.org Find PCORI Online