1. Stakeholder Engagement and Transparency in The Effective Health Care Program Supriya Janakiraman MD MPH AHRQ

2. Outline Overview of the Effective Health Care Program Overview of the Effective Health Care Program Stakeholder engagement –examples of current activities and looking to the future Stakeholder engagement –examples of current activities and looking to the future Transparency Transparency Opportunities for involvement Opportunities for involvement

3. Effective Health Care Program Comparative Effectiveness Research Authorized under Sec. 1013 of MMA To improve the quality, effectiveness, and efficiency of health care delivered through Medicare, Medicaid, and S-CHIP programs – – Focus is on clinical effectiveness and comparative effectiveness

4. Definition: HHS Comparative effectiveness research is the conduct and synthesis of research comparing the benefits and harms of different interventions and strategies to prevent, diagnose, treat and monitor health conditions in “real world” settings. The purpose of this research is to improve health outcomes by developing and disseminating evidence-based information to patients, clinicians, and other decision-makers, responding to their expressed needs, about which interventions are most effective for which patients under specific circumstances. Recovery Act Spend Plan, Office of the Secretary, 11/09

5. Research Focus: Priority Conditions 1. Arthritis and non-traumatic joint disorders 2. Cancer 3. Cardiovascular disease, including stroke and hypertension 4. Dementia, including Alzheimer’s Disease 5. Depression and other mental health disorders 6. Developmental delays, ADHD and autism 7. Diabetes mellitus 8. Functional limitations and disability 9. Infectious disease including HIV/AIDS 10. Obesity 11. Peptic ulcer disease and dyspepsia 12. Pregnancy including preterm birth 13. Pulmonary disease/asthma 14. Substance abuse

6. Effective Health Care Program A. Evidence synthesis (EPC program) – Systematically reviewing, synthesizing, comparing existing evidence on treatment effectiveness. – Identifying relevant knowledge gaps. B. Evidence generation (DEcIDE, CERTs, Research Grant Awards) – Development of new scientific knowledge to address knowledge gaps. – Accelerate practical studies C. Evidence communication/translation (Eisenberg Center) – Translate evidence into improvements – Communication of scientific information in plain language to policymakers, patients, and providers.

7. Program Outputs Research Reports Systematic Reviews Consumer Guides

8. Conceptual Framework Stakeholder input & involvement

9. Definition Stakeholders - Persons or groups who have a vested interest in a clinical, research or health policy decision. Stakeholders - Persons or groups who have a vested interest in a clinical, research or health policy decision. Public – Members of the general public identified without regard to medical background or experience. Public – Members of the general public identified without regard to medical background or experience.

10. Stakeholder Engagement in Evidence Synthesis

11. Stakeholder Engagement in Evidence Generation Oncology, CV, & Diabetes DataCommittee ClinicalCommittee MethodsCommittee StakeholderCommittee Administrative Committee Project Manger Executive Committee – Includes AHRQ, Coordinating and Affiliate Center

12. Translation Facilitate Informed Health Care Decisions by:  Patients  Providers  Policymakers Scientific Evidence Understandable and Usable Information Eisenberg Clinical Decisions and Communication Science Center

13. Stakeholder Group Twenty member volunteer committee representing clinicians, consumers, government, payers, and industry Provides perspective on research gaps and methodology Provides user perspective on EHC Program accountability and transparency Identifies products most useful to decision-makers Identifies opportunities for increased stakeholder involvement

14. Community Forum ARRA-funded initiative to expand and systematize public and stakeholder engagement in AHRQ’s Effective Healthcare (EHC) Program Will develop and demonstrate deliberative methods and tools for obtaining informed public opinion as an input to decisions related to the conduct of comparative effectiveness research (CER), as well as the application of research results in policy and practice. Will improve methods and opportunities for stakeholder engagement, working with the EHC program components to expand stakeholder involvement in research processes and activities. Will support the EHC Stakeholder Group, including facilitating Stakeholder Group meetings, and managing logistical requirements.

15. Transparency Decisional – – Disposition documents for topic nominations and selection criteria Procedural Methodological – – Protocols posted – – Key Questions posted – – Draft Reports are posted

16. Opportunities for involvement in the EHC Program Nominate priorities and topics for research Comment on key research questions and outcomes important to patients Review draft documents

17. Thank you. Effective Health Care Program - http://www.effectivehealthcare.ahrq.gov http://www.effectivehealthcare.ahrq.gov Supriya Janakiraman - supriya.janakiraman@ahrq.hhs.gov