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Expanding the Reach and Impact of
Consumer e-Health Tools

June 2006

Office of Disease Prevention and Health Promotion logo

Table of Contents
Executive Summary (Stand-Alone)
Acknowledgments
Preface: A Vision of e-Health Benefits for All
Executive Summary
Chapter 1. Introduction
Chapter 2. Mapping Diversity to Understand Users’ Requirements for e-Health Tools
Chapter 3. Assessing the Evidence Base for e-Health Tools for Diverse Users
Chapter 4. Strategic Factors in Realizing the Potential of e-Health
Chapter 5. Partnerships for Meaningful Access
Conclusion
Appendix 1. Environmental Scan of 40 e-HealthTools
Appendix 3. Chapter 3 Literature Review Summary
Appendix 4. A Comparison of Internet Use and Health Status of Populations That Experience Health Disparities
References

Appendix 2. Project Interviewees, Experts Consulted, and Reviewers

e-Health Tool Developers and Researchers Interviewed

Wendy Angst, M.H.A.
CapMed, a Division of Bioimaging Technologies
e-Tool: PHR (Personal Health Record) and Personal HealthKey
www.bioimaging.com

Dennis Ary, Ph.D.
Oregon Center for Applied Science (ORCAS)
General overview of ORCAS products
www.orcasinc.com

Sarah Berg
Ripple Effects
e-Tool: Bring It On
www.rippleeffects.com

Susan Brink, Dr.P.H.
Healthmark Multimedia
e-Tool: Adventures with the Shady Characters
www.healthmarkmultimedia.com

Vesta Brue, M.B.A.
Smoke Signals
e-Tool: SmokeSignals
www.smokesignals.net

Simon Budman, Ph.D.
Inflexxion
e-Tool: myStudentBody—Alcohol
www.mystudentbody.com

Ginger Carrieri-Kohlman, Ph.D.
University of California, San Francisco (UCSF) School of Nursing
e-Tool: eDSMP (Internet-based dyspnea self-management program)
www.managesob.org

Adrian Casillas, M.D.
Geffen School of Medicine, University of California, Los Angeles (UCLA)
e-Tool: Airaware (IMMEX)
www.immex.ucla.edu (background information)
www.immex.ucla.edu/docs/collaborations/airaware.htm

Brian Cuffel, Ph.D.
LifeMasters
e-Tool: LifeMasters
www.lifemasters.com

Adam Darkins, M.D., M.P.H., F.R.C.S.
Veterans Health Administration
e-Tool: Care Coordination, VHA Telehealth
http://www.telehealth.va.gov/

David Feffer, M.P.H.
Health Dialog Services Corporation
e-Tool: HealthDialog.com
www.healthdialog.com

Barry Fortner, Ph.D.
Supportive Oncology Services
e-Tool: Supportive Oncology Services (SOS) information system

Patricia Franklin, M.D., M.P.H., M.B.A.
University of Massachusetts Medical School
e-Tool: RealAge
www.realage.com

Gilles Frydman
Association of Cancer Online Resources (ACOR)
e-Tool: ACOR
www.acor.org

Harold Goldberg, M.D., M.A.
University of Washington and NuMedics, Inc.
e-Tool: Internet Comanagement Module for Type 2 Diabetes: The Living with Diabetes Project

Alan Greene, M.D., Cheryl Greene, and Beverly Richardson
Greene Ink, Inc.
e-Tool: drgreene.com and drgreene.org
www.drgreene.com and www.drgreene.org

David Gustafson, Ph.D., M.S., and Fiona McTavish, M.S.
University of Wisconsin
e-Tool: CHESS (Comprehensive Health Enhancement Support System) (overview)
http://www.chsra.wisc.edu/

James Hereford, M.S.
Group Health Cooperative, Seattle
e-Tool: mygrouphealth.org
http://www.ghc.org/

John Hsu, M.D., M.B.A.
Kaiser Permanente
e-Tool: www.kaiserpermanente.org

Sharmila Kamani
Degge Group
e-Tool: Kidz with Leukemia: A Space Adventure
www.kidzwithleukemia.com

Donald Kemper, M.P.H.
HealthWise
e-Tool: Information therapy
www.healthwise.org

Matthew Kreuter, Ph.D., M.P.H.
St. Louis University
e-Tool: Reflections of You
http://hcrl.wustl.edu/

Brian Laing, M.S.
Mayo Clinic
e-Tool: MayoClinic.com
www.mayoclinic.com

Kate Lorig, Ph.D.
Stanford University Department of Medicine
e-Tool: Diabetes self-management online
http://patienteducation.stanford.edu

Howard Mahran
NexCura
e-Tool: NexCura.com, cancerfacts.com, heartfacts.com
www.nexcura.com

Tami Mark, Ph.D.
Medstat
e-Tool: SOS (Supportive Oncology Services) Information Services
www.medstat.com

Phil Marshall, M.D., M.P.H.
WebMD
e-Tool: WebMD Health Manager and Personal Health Manager
www.webmd.com

Kevin Patrick, M.D., M.S.
University of California, San Diego
e-Tool: PACE I-DP (Patient-centered Assessment & Counseling for Exercise & Nutrition Internet Diabetes Prevention)
http://paceproject.org

Ginger Price
Veterans Health Administration
e-Tool: My HealtheVet
https://www.myhealth.va.gov/mhv-portal-web/anonymous.portal?_nfpb=true&_nfto=false&_pageLabel=mhvHome&WT.ac=splash_MHVHome_EnterBox

Barbara Rapchak
Leap of Faith
e-Tool: One World

Barbara Rimer, Dr.P.H., M.P.H.
University of North Carolina
e-Tool: ACOR
www.acor.org

Michael Roizen, M.D.
SUNY Upstate Medical University
e-Tool: RealAge
www.realage.com

Daniel Sands, M.D., M.P.H.
Beth Israel Deaconess Hospital/CareGroup
e-Tool: PatientSite, Beth Israel Deaconess/CareGroup
www.caregroup.org/patientsite.asp

Dirk Schroeder, Sc.D., M.P.H.
HispaniCare
e-Tool: DrTango
http://drtango.com

Skye Schulte, M.S., M.P.H.
HealthGate
e-Tool: HealthGate

Ed Sharpless
Healthtrac
e-Tool: MyHealthtrac
www.healthtrac.com

Steven Shea, M.D.
Columbia University Division of General Medicine
e-Tool: IDEATel (Informatics for Diabetes Education and Telemedicine) Project
www.ideatel.org

Cynthia Solomon
Access Strategies, Inc.
e-Tool: MiVIA.org and FollowMe.com
www.mivia.org and www.followme.com

Victor Strecher, Ph.D., M.P.H.
University of Michigan
e-Tool: NCI Centers of Excellence, Project 1
http://chcr.umich.edu

Paul Tang, M.D.
Palo Alto Medical Foundation (PAMF)
e-Tool: PAMFOnline
www.pamfonline.org

Richard Thorp
MultiMedia Systems, Inc.
e-Tool: Cervical Cancer MultiMedia Toolbox for Vietnamese American Women

Armando Valdez, Ph.D.
Valdez & Associates
e-Tool: Breast Cancer Kiosk

Kevin Wildenhaus, Ph.D.
HealthMedia
e-Tool: Balance
www.healthmedia.com

Eric Zimmerman, M.P.H., M.B.A.
Relay Health Corporation
e-Tool: RelayHealth
www.relayhealth.com

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General Background on e-Health

Connie Dresser, R.D.P.H., R.M.
National Cancer Institute (NCI)
Small Business Innovation Research Program

Tom Ferguson, M.D.
University of Texas
The Ferguson Report

Susan Fussell, Ph.D.
Human Computer Interaction Institute, Carnegie Mellon University

Ed Madara, M.S.
American Self-Help Clearinghouse

Dena Puskin, Sc.D.
Office of Health Information Technology
Health Resources and Services Administration (HRSA)
U.S. Department of Health and Human Services (HHS)

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Meeting With HHS Staff on Consumer and Patient e-Health Tools
March 3, 2004

Purpose: To consult with HHS staff about the direction and status of the project and identify e-health research projects at HHS

Participants:

David Baker, ODPHP, HHS

Cynthia Baur, Ph.D., ODPHP, HHS

S. Scott Brown, M.P.H., Centers for Disease Control and Prevention (CDC), HHS

Mary Jo Deering, Ph.D., ODPHP, HHS

Leslie Hsu, M.P.H., ODPHP, HHS

Susan Baird Kanaan, M.S.W., Consultant

Susan Katz, M.P.H., CDC, HHS

Sonya Lewis, M.A., R.D., CDC, HHS

Karen McCoy, Centers for Medicare & Medicaid Services (CMS), HHS

Cecilia McNamara, Ph.D., National Institute on Drug Abuse (NIDA), National Institutes of Health (NIH), HHS

Susan Newcomer, Ph.D., National Institute of Child Health and Human Development (NICHD), NIH, HHS

Clara Olaya, M.A., CDC, HHS

Erica Talley, CDC, HHS

Margaret Tolbert, Food and Drug Administration, HHS

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Conference Call on Audience Factors
April 1, 2004

Purpose: To expand on interview findings regarding how e-health tool developers and researchers think about audiences as they develop and evaluate their tools

Participants:

Cynthia Baur, Ph.D., ODPHP, HHS

Adrian Casillas, M.D., Geffen School of Medicine, UCLA (written comments)

Sarah Berg, RippleEffects

Simon Budman, Ph.D., Inflexxion

Alan Greene, M.D., drgreene.com

Susan Baird Kanaan, M.S.W., Consultant

Jim Price, M.B.A., DrTango

Suzanne Suggs, Ph.D., M.Sc., HealthMedia

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Conference Call on e-Health and Community Technology Access
May 18, 2004

Purpose: To explore the role of community technology in expanding access to e-health tools for underserved populations

Participants:

Terry Baines, Telehealth Liaison, Alaska Department of Health and Social Services

Cynthia Baur, Ph.D., ODPHP, HHS

Laura Breeden, America Connects Consortium, Education Development Center

Richard Chabran, Community Partners

Ben Hecht, J.D., One Economy

Leslie Hsu, M.P.H., ODPHP, HHS

Susan Baird Kanaan, M.S.W., Consultant

Wendy Lazarus, M.P.H., Children’s Partnership

Laurie Lipper, Children’s Partnership

Patty Owen, Health Promotion Unit, Division of Public Health, Alaska Department of Health and Social Services

Randal Pinkett, Ph.D., M.B.A., Building Community Technology Partners, LLC

Alice Rarig, Office of Rural Health and Primary Care, Alaska Department of Health and Social Services

Elisabeth Stock, M.C.P., M.Sc., Computers for Youth

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Draft Report Review Meeting
November 22, 2004

Purpose: To review the first draft of the present report

Participants:

David Ahern, Ph.D., Health e-Technologies Initiative, Brigham and Women’s Hospital

Cynthia Baur, Ph.D., ODPHP, HHS

Sarah Brachle, One Economy

Susan Brink, Dr.P.H., Healthmark Multimedia, LLC

Simon Budman, Ph.D., Inflexxion

Tom Eng, V.M.D., M.P.H., eHealth Institute

Patricia Franklin, M.D., M.P.H., M.B.A., University of Massachusetts Medical School

Susan Baird Kanaan, M.S.W., Consultant

Gary Kreps, Ph.D., George Mason University

Guadalupe Pacheco, M.S.W., Office of Minority Health, HHS

Randal Pinkett, Ph.D., Building Community Technology Partners, LLC

Dirk Schroeder, Sc.D., M.P.H., HispaniCare

Kavita Singh, Ed.M., Community Technology Centers’ Network (CTCNet)

Jessica Townsend, Office of Planning and Evaluation, HRSA, HHS

Sandra Williams, M.A., NIH, HHS

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Other Reviewers of the Report

Jeffrey Bauer, Ph.D., ACS Healthcare Solutions

Helen Burstin, M.D., Agency for Healthcare Research and Quality, HHS

Jodi Daniel, J.D., M.P.H., Office of the National Coordinator for Health Information Technology, HHS

Connie Dresser, R.D.P.H., R.M., NCI, NIH, HHS

Susannah Fox, Pew Internet & American Life Project

Miryam Granthon, M.P.H., Office of Minority Health, HHS

Linda Harris, Ph.D., NCI, NIH, HHS

Helga Rippen, M.D., Ph.D., M.P.H., Office of the Assistant Secretary for Planning and Evaluation, HHS

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Research Assistants

Leslie Hsu, M.P.H., ODPHP, HHS

Omar Passons, M.P.H., ODPHP, HHS

Rhonda Royster, M.P.H., IQ Solutions, Inc.

Sandra Saperstein, M.S., IQ Solutions, Inc.

Eva Tetteyfio, M.H.S., IQ Solutions, Inc.

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