PCORI’s Role in Dissemination of

1. PCORI’s Role in Dissemination of Patient-Centered Outcomes Research: Not “From the Ground Up”

2. Members of the Joint AHRQ/PCORI Dissemination Workgroup Carolyn Clancy, Co-Chair Sharon Levine, Co-Chair Lawrence Becker Allen Douma Howard Holland Gail Hunt Freda Lewis-Hall Steve Lipstein Brian Mittman Robin Newhouse Grayson Norquist Jean Slutsky

3. Legislation ‘‘(c) PURPOSE.—The purpose of the Institute is to assist patients, clinicians, purchasers, and policy-makers in making informed health decisions ….and the dissemination of research findings with respect to the relative health outcomes, clinical effectiveness, and appropriateness of the medical treatments, services, and items described in subsection (a)(2)(B). ‘‘(1) DISSEMINATION.—The Office of Communication and Knowledge Transfer (referred to in this section as the ‘Office’) at the Agency for Healthcare Research and Quality (or any other relevant office designated by Agency for Healthcare Research and Quality), in consultation with the National Institutes of Health, shall broadly disseminate the research findings that are published by the Patient Centered Outcomes Research Institute established under section 1181(b) of the Social Security Act (referred to in this section as the ‘Institute’) and other government-funded research relevant to comparative clinical effectiveness research. The Office shall create informational tools that organize and disseminate research findings for physicians, health care providers, patients, payers, and policy makers. The Office shall also develop a publicly available resource database that collects and contains government-funded evidence and research from public, private, not-for profit, and academic sources.” Purpose Source: Affordable Care Act. Subtitle D—Patient-Centered Outcomes Research. PUBLIC LAW 111–148—MAR. 23, 2010.

4. PCORI Dissemination Assumptions • “Success” for PCORI and AHRQ = impact on practice and patient outcomes • PCORI will disseminate results of PCORI-funded and conducted research and PCORI will also fund research on dissemination, but will complement and supplement what AHRQ/NIH are doing, not duplicate efforts • PCORI has unique opportunities – and legislative requirements • Dissemination is essential and requires investment, which could occur in multiple ways: • Encourage / require “dissemination accelerating components” in all PFAs • Provide rapid follow-on funding for dissemination for selected studies

5. PCORI Dissemination Assumptions (cont’d) • PCORI has a related role and opportunity in creating demand for, and receptivity to, PCOR in anticipation of evidence/research findings • Not a one-size fits all endeavor—translating results, and influencing behavior, is context-dependent • PCORI will be most effective by establishing partnerships early (with AHRQ, NIH, NGO’s and private sector actors) and clarifying what PCORI will and will not do • Effective patient and stakeholder engagement, early on in the research endeavor, is the first step in planning and executing dissemination, and facilitating uptake

6. First Steps: Learning from the Work of Others Defining “successful dissemination” and potential obstacles/barriers to success Identifying dissemination activities of other organizations, including AHRQ, to determine potential gaps PCORI might fill Lessons from dissemination studies that may be relevant to PCORI Develop a Dissemination Framework and Strategy to guide PCORI’s work, and to reflect the opportunities for partnership and collaboration

7. Learnings • Programs are most successful when they are audience-centered and use the audiences’ preferred formats, channels and trusted sources of information • Credentials are important in gaining access to healthcare providers • Health plans, health systems, and large medical groups can provide valuable and systematic access to clinicians • Clinicians and Patients each want unbiased and balanced information from a trusted and credible source • Disseminating new research differs from disseminating systematic reviews • Potential for CER results to influence practice not yet realized – where the opportunity lies

8. Learnings (cont) • Current under-appreciation for the roles of specialty societies in changing clinical practice: ChoosingWisely campaign, and its impact on prasctice, bears watching • Information on successful practices, and the rate of diffusion, is needed • Need to create demand on the front end—this could be written into PCORI solicitations: “Dissemination Accelerating Components” in PFA’s

9. Dissemination Accelerating Components: Proposed Checklist Stakeholders Identify stakeholders (including patients, caregivers, clinicians, communities, policy makers and institutions) for whom the results of the research will be relevant and meaningful Describe the points in the research processs at which key stakeholders will be engaged, from the early planning process and throughout the study Describe how you will engage stakeholders at each identified point during the study and at its conclusion, including sharing and discussing research results Engagement Points Engagement Type Governance Plan • Describe how you will develop a governance plan for the project that articulates specific roles and responsibilities for the research team and stakeholder groups, and defines rules for decision making and conflict resolution/resolution of differences

10. Dissemination Accelerating Components: Proposed Checklist (cont’d) Study Results Describe how you will convey study results to stakeholders and study participants Describe how you will identify facilitators and barriers to dissemination of results, and incorporation of results into practice, including but not limited to the process of engaging stakeholders. Describe how you will allocate and share resources with stakeholders Barriers Assessment Resource Sharing