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Slide 1

Supporting Patient and Consumer Involvement in Patient-Centered Outcomes Research
Danielle Lavallee
AHRQ Community Forum

October 13, 2011

Logo: Effective Health Care Program, Community Forum

Slide 2

Overview

  • Provide a brief overview of the Agency for Healthcare Research and Quality (AHRQ) Community Forum
  • Describe Community Forum efforts to broaden patient and consumer involvement in the EHC Program
  • Presentations
    • Outreach to Patient and Consumer Representatives
      • Carolyn Branson, SRA International
    • Support for Patient and Consumer Representatives
      • Amy Bonoff, NBCC Project LEAD
    • Partnering with Patients to Disseminate Research Products
      • Lawrence Sadwin, American Heart Association

Slide 3

Goals

  • Understand approaches to effectively and efficiently identify patient and consumer representatives;
  • Describe approaches to best support and train patient and consumer representatives; and
  • Understand strategies for partnering with patients and consumers in the translation and dissemination of research products.

Slide 4

Community Forum Project

  • Part One: Explore the use of public deliberation as a method for eliciting input from the public on health care issues, particularly in the conduct and use of CER.
    • Assess what is known about public deliberation
    • Conduct a large randomized controlled experiment of alternative methods of public deliberation

Slide 5

Community Forum Project

  • Part Two: Support and enhance stakeholder involvement in all aspects of AHRQ’s expanded Effective Healthcare Program.
    • Collaborative partnership:
      • American Institutes for Research
      • Center for Medical Technology Policy
      • Consumers Union
      • AcademyHealth

Slide 6

Community Forum Project: Support patient and consumer participation

  • Understand best approaches to support patient and consumer involvement
  • Develop capacity building resources for patients, consumers and researchers
  • Identify and learn from other organizations who successfully involve the patients and consumers

 Slide 7

Supporting Patient and Consumer Involvement

Technical Expert Panel (TEP) Members Affiliation

Amy Bonoff

National Breast Cancer Coalition Project LEAD

Carolyn Branson

SRA International

Deborah Collyar

Patient Advocates in Research (PAIR)

Virna Elly

Patient Advocate

Nancy Fitton

Consumers United for Evidence-Based Healthcare CUE)

Peg A. Ford

Patient Advocate, Ovarian Cancer Advocacy Alliance

Andrea Furia-Helms

FDA Patient Representative Program

Lawrence Sadwin

Patient Advocate, American Heart Association

John Santa

Consumers Union

Jennifer Sweeney

National Partnership for Women

Slide 8

Today's Presenters

  • Outreach to Patient and Consumer Representatives
    • Carolyn Branson, SRA International
  • Support for Patient and Consumer Representatives
    • Amy Bonoff, NBCC Project LEAD
  • Partnering with Patients to Disseminate Research Products
    • Lawrence Sadwin, American Heart Association