Stakeholder Engagement and Transparency in

The Effective Health Care Program

Supriya Janakiraman MD MPHAHRQ

Outline

Overview of the Effective Health Care Program

Stakeholder engagement –examples of current activities and looking to the future

Transparency Opportunities for involvement

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

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

Research Focus: Priority Conditions

1. Arthritis and non-traumatic joint disorders2. Cancer3. Cardiovascular disease, including stroke and hypertension4. Dementia, including Alzheimer’s Disease5. Depression and other mental health disorders6. Developmental delays, ADHD and autism7. Diabetes mellitus8. Functional limitations and disability9. Infectious disease including HIV/AIDS10. Obesity11. Peptic ulcer disease and dyspepsia12. Pregnancy including preterm birth13. Pulmonary disease/asthma14. Substance abuse

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.

Program OutputsResearchReports

SystematicReviews

Consumer Guides

Conceptual Framework

Stakeholder input & involvement

Definition

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.

Stakeholder Engagement in Evidence Synthesis

Topic Generation

Topic Development

Topic Refinement

Research Review

Research Needs Development

Report Translation and Dissemination

Generate nominations

relevant to “real-world” health care

decisions

Clarify nomination and decisional

dilemma

Clarify and refine key questions to accurately reflect

the decisional issue

Provide clinical & methodological input to EPC’s

protocol

Provide input to develop and

prioritize research gaps

Test and provide input on summary

guide development

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Stakeholder Engagement in Evidence Generation

Oncology, CV , & Diabetes

DataCommittee

ClinicalCommittee

MethodsCommittee

StakeholderCommittee

Administrative Committee

Project Manger

Executive Committee – Includes AHRQ, Coordinating and Affiliate Center

Translation

Facilitate Informed Health Care Decisions by: Patients Providers Policymakers

ScientificEvidence

Understandableand UsableInformation

Eisenberg Clinical Decisions and Communication Science Center

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

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.

Transparency

Decisional– Disposition documents for

topic nominations and selection criteria

Procedural Methodological

– Protocols posted– Key Questions posted – Draft Reports are posted

Results of Topic Selection Process & Next Steps

Sleep apnea treatment will go forward for refinement as a comparative effectiveness or effectiveness review. The scope of this topic, including populations, interventions, comparators, and outcomes, will be further developed in the refinement phase.

When key questions have been drafted, they will be posted on the AHRQ web site and open for public comment. To sign up for notification when this and other Effective Health Care Program topics are up for public comment, please go to http://effectivehealthcare.ahrq.gov/getInvolved.cfm?involvetype=subscribe.

Topic Description Nominators: 2 public payers, 1 health care professional association

Nomination Summary:

This topic represents nominations, respectively, by three nominating groups. The treatments for sleep apnea covered in these nominations include continuous positive airway pressure (CPAP), oral appliances, uvulopalatopharyngoplasty (UPPP), radiofrequency ablation (RFA), bariatric surgery, counseling, and lifestyle modifications. In addition, one nominator expressed interest in patients with comorbidities (including pulmonary hypertension and heart failure). Outcome measures include mortality reduction, quality of life (objectively measured), functional improvement, and reduction in comorbid conditions or resolution of these conditions.

Key Questions from Nominators:

Nominator 1 (public payer): For each of the treatment options for obstructive sleep apnea (CPAP, oral appliances, UPPP, and RFA), we ask the following questions:

1. Does the technology improve quality of life and function, and if so, to what extent and at what cost?

2. For which presenting symptoms of obstructive sleep apnea (OSA) does the technology result in an improvement, and if so, to what extent and at what cost?

3. Does the technology prevent or reduce comorbidities associated with OSA, and if so, to what extent and at what cost?

4. Does the technology prevent or reduce mortality, and if so, to what extent and at what cost?

Nominator 2 (public payer):

1. What other modalities of treatment, including weight loss, surgery, and oral appliances, would be better tolerated and more efficacious than CPAP?

Treatment of Sleep Apnea Nomination Summary Document

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

Thank you.

Effective Health Care Program- http://www.effectivehealthcare.ahrq.gov

Supriya Janakiraman- supriya.janakiraman@ahrq.hhs.gov