Pr o g r a m s su pp o r t i n g th e us e of Co m P a r a t i v e ef f e C t i v e n e s s re s e a r C h an d Pa t i e n t - Ce n t e r e d ou t C o m e s re s e a r C h By st a t e Po l i C y m a k e r s Barbara Wirth and Felicia Heider u g u s t A 2014 h i s p r o j e c T w a s s u p p o r T e d T h r o u g h a a T i e n T e n T e r e d u T c o m e s e s e a r c h n s T i T u T e T u g e n e ap s h i n g T o-c n n g a g e mo e n T w a r d r i (pcori) e w e a II Pr o g r a m s su pp o r t i n g th e us e of Co m P a r a t i v e ef f e C t i v e n e s s re s e a r C h an d Pa t i e n t - Ce n t e r e d ou t C o m e s re s e a r C h By st a t e Po l i C y m a k e r s Copyright © 2014 National Academy for State Health Policy. For reprint permission, please contact NASHP at (207) 874-6524. This publication is available on the web at: www.nashp.org b o u t t h e A t i o na l c A d e m y f o r t A t e e A l t h o l i c y A N A S h P The National Academy for State Health Policy We work across a broad range of health policy (NASHP) is an independent academy of state topics including: health policymakers. We are dedicated to • Affordable Care Act and State Health helping states achieve excellence in health Care Reform policy and practice. A non-profit and non- • Coverage and Access partisan organization, NASHP provides a forum • Medicaid for constructive work across branches and • Quality, Cost, and Health System agencies of state government on critical health Performance issues. • Long Term and Chronic Care To accomplish our mission we: • Quality and Patient Safety • Population and Public Health • Convene state leaders to solve problems • Insurance Coverage and Cost and share solutions Containment • Conduct policy analyses and research • Disseminate information on state policies Our strengths and capabilities include: and programs • Active participation by a large number • Provide technical assistance to states of volunteer state officials • Developing consensus reports through The responsibility for health care and health active involvement in discussions among care policy does not reside in a single state people with disparate political views agency or department. At NASHP, we provide a • Planning and executing large and unique forum for productive interchange across small conferences and meetings with all lines of authority, including executive offices substantial user input in defining the and the legislative branch. agenda • Distilling the literature in language useable and useful for practitioners • Identifying and describing emerging and promising practices • Developing leadership capacity within states by enabling communication within and across states For more information about NASHP and its work, visit www.nashp.org Portland, Maine Office: Washington, DC Office: 10 Free Street, 2nd Floor 1233 20th Street, NW, Suite 303 Portland, ME 04101 Washington, DC 20036 Phone: [207] 874-6524 Phone: [202] 903-0101 National Academy for State Health Policy Follow us @nashphealth on Twitter III Table of Contents Acknowledgments iv Executive Summary 1 Introduction 2 Methodology Background on CER and PCOR 3 What are CER and PCOR? 3 How many state policymakers surveyed use CER and PCOR findings? 3 How can CER and PCOR be used in policymaking? 4 Who funds and conducts CER and PCOR? 5 Programs Based in State Agencies 6 Commissions Serving Multiple Agencies 6 Agency-Specific Advisory Groups/Committees 7 Programs Existing Outside of State Agencies 9 Multi-state Collaboratives 9 Federal Government Programs 10 Academic Institutions 10 Non-profit organizations 11 For-profit organizations 12 Summary 15 Appendix 17 Survey Results 17 Semi-Structured Interviews with Policymakers 18 Endnotes 19 National Academy for State Health Policy Programs Supporting The Use Of Comparative Effectiveness Research And Patient-Centered Outcomes Research By State Policymakers IV aC knowledgments T he authors would like to thank the state health policymakers who participated in the survey and calls including Deidre Gifford, Michelle Harper, Leah Hole-Marshall, and Judy Zerzan. We would also like to thank the state health policymakers who reviewed this report including Chris Atchison, Laura Nasuti and Emily Parento. We would like to acknowledge staff from the National Academy for State Health Policy, including Mary Takach, Senior Program Director, for her input and review of this report. Finally, the authors are grateful for the support from Greg Martin and others at the Patient-Centered Outcomes Research Institute. National Academy for State Health Policy Programs Supporting The Use Of Comparative Effectiveness Research And Patient-Centered Outcomes Research By State Policymakers 1 ex e C u t i v e su m m a r y I n the American Recovery and Reinvestment Act of 2009, Congress invested $1.1 billion to support 1 the development and dissemination of comparative effectiveness research (CER), which is designed to examine the benefits and harms of alternative interventions related to health care. In 2010, under the Patient Protection and Affordable Care Act, Congress built on this major investment, by authorizing the creation of the private, non-profit Patient-Centered Outcomes Research Institute (PCORI) to fund 2 comparative clinical effectiveness research guided by patients, caregivers and the broader healthcare community, also known as Patient-Centered Outcomes Research (PCOR). CER and PCOR provide state policymakers with evidence comparing the effectiveness and safety of different interventions being considered for use within their state. In addition to supplying background information on CER and PCOR, this report provides examples of various programs supporting the generation, synthesis, analysis, and implementation of this research in policy decision making. State agency programs supporting the use of CER and PCOR vary from commissions charged with reviewing evidence on multiple issues to single-agency advisory groups focused on a specific health-related topic. Bureaus or commissions may use their reviews of research to make evidence-based recommendations for multiple state agencies. The Oregon Health Evidence Review Commission (HERC), for 3 example, conducts CER on health technologies and maintains a list of the comparative benefits of various health services for use by state agencies. Existing standing agency-specific advisory groups, such as Medicaid Medical Advisory Committees, are specifically tasked with using research to advise the state on medical issues impacting state Medicaid policies. Numerous CER and PCOR programs are also based outside of state agencies and include multistate collaboratives, federal government initiatives, programs housed in academic institutions, and both private 4 not-for-profit and for-profit organizations. Multi-state collaborations such as the New England Comparative Effectiveness Public Advisory Council (CEPAC) serve a unique role both as a source of CER and as a support for state agencies to collaborate, better understand, and use the evidence to inform their work. Multiple CER and PCOR initiatives are supported by the federal government and often serve as a driving force for funding, conducting, and disseminating CER and PCOR, including the support of research programs housed in academic institutions. State health policymakers have access to a range of programs with the potential to support the use of CER and PCOR in decision making. The examples of programs described in this report provide support for the use of CER and PCOR either by funding and conducting the research, reviewing and synthesizing available research, and/or supporting the translation of research findings into information that policymakers can use when making program and policy decisions. Knowledge of these existing programs will aid state policymakers in leveraging CER and PCOR to make informed policy decisions. National Academy for State Health Policy Programs Supporting The Use Of Comparative Effectiveness Research And Patient-Centered Outcomes Research By State Policymakers 2 in t r o d u C t i o n I n the American Recovery and Reinvestment Act of 2009, Congress invested $1.1 billion to support 5 the development and dissemination of comparative effectiveness research (CER) designed to examine the benefits and harms of alternative interventions related to health care. In 2010, under the Patient Protection and Affordable Care Act, Congress built on this major investment, by authorizing the creation of the Patient-Centered Outcomes Research Institute (PCORI) to fund comparative clinical 6 effectiveness research guided by patients, caregivers and the broader healthcare community, also known as Patient-Centered Outcomes Research (PCOR). CER and PCOR provide state policymakers with evidence comparing the effectiveness and safety of different interventions being considered for use within their state. The purpose of this review is to provide information on various state programs currently funding, conducting or supporting state policymakers in using CER and PCOR to inform policy decision making. Multiple entities exist, including programs housed within specific state agencies and others established outside of agencies, including, for example, programs operating as multi-state collaboratives, programs based in academic institutions or within non-profit or for-profit organizations.