Consumer Empowerment Workgroup - Archive

• Agenda
• Update on Education and Outreach Plans for Minorities - Garth Graham
• Health Information Exchange and PHRs - Chris Muir (ONC)
• Analysis and Trends of Internet Based PHRs - John Moore (Chilmark Research)
• Microsoft and Google PHRs - Wes Rishel (Gartner)
• CE Workgroup Consolidated Meeting Summary

General Materials:
• Agenda
• Womack - Ad Hoc Clinical Decision Support Update
• Horan - Disability Recommendations Update
• Bell - Racial and Ethnic Communities/Underserved Recommendations
• Nall - Consumer Empowerment Workgroup Recommendations for Social Media
• Wattenberg - Consumer Consent Recommendation Discussion
• Ennis and Roberts - Gaps in Current Work
• CE-Recommendations Jan 2006-May 2008

General Materials:
• Agenda
• Seidman - Strategies for Shared Decision Support through the Integration of HIT and Patient-Centered Care
• Sepucha - Tools to Support Knowledge-Based and Patient-Centered Medical Decisions
• Nall - Social Media – Follow up
• Nall - Recommendations/Discussion
• Heywood - PatientsLikeMe
• Brennan - PHRs – Engaging Patients and Clinicians in Healthy Choices

General Materials:
• Agenda
• Horan - Disability Subgroup Proposed Recommendations
• Bernhardt - What is Social Media?
• Johnmar - Trends in Social Media: Who is using it? What are they using?
• Nall - Examples of Health Applications in Social Media
• Ahern - Evidence Base for Social Media Use in Health
• Wedner - Perspectives from a Social Network

General Materials:
• Agenda
• Graham - Proposed Recommendations for HIT for Racial and Ethnic Communities
• Bell - Ad HOC Clinical Decision Support Recommendations
• Winkenwerder - HIT and Consumer Attitudes
• Clinical Decision Support Background Letter
• Bell - PHR Paradigm slides

General Materials:
• Agenda
• Gibbons - Technologies and Disparities
• Palacios - Use of Electronics Medical Records
• Ficco - Using Technology to Improve Migrant Health Care Delivery
• Weinberg - Now, Not Later
• Horan - CE Disabilities Subgroup Status Update
• Bell - Diagrams of the PHR Paradigm
• Graham - Proposed Recommendations

General Materials:
• Agenda
• Garth Graham - HIT and Reducing Health Disparities
• Teresa Zayas Cabán - Working to Reduce Disparities Through HIT
• Ruth Perot - HIT and Racial Ethic Minority Health
• Lorraine Doo - Interim Update of the PHR Pilot Study
• Use Case Discussion
• John Loonsk - AHIC Priorities and Use Cases

General Materials:
• Agenda
• Karen Bell – Bridges to Health
• Fred Cowell – Personal Health Records (PHRs) for People with Disabilities
• David Stapleton – The Role of Personal Health Records in the Disability Policy Transition
• Ron Manderscheid – Empowering Disabled Consumers Through Personal Health Records
• Thomas Horan – Disability Systems as a Key Component of Personal Health Record Success
• Kim Nazi - My HealtheVet PHR Part II : Q&A
• Karen Bell – Use Case Prioritization

General Materials:
• Agenda
• Simon Cohn - Secondary Uses of Health Data
• Elaine Blechman - Personal Electronic Health Records: Types, Capabilities, Consumer Needs, & Value Propositions
• Paul Tang - Facilitating Online Care: A Proposed Reimbursement Model
• Kim Nazi - My HealtheVet PHR
• Consumer Empowerment Recommendations

General Materials:
• Agenda
•  Secondary Use of Health Data White Paper (available in PDF only, 109 kb)
Secondary Uses of Data Testimony:
• Dr. Charles Safran, Harvard Medical School - Toward a National Framework for the Secondary Use of Health Data: An American Medical Informatics Association White Paper Presentation
• Jonathan White, AHRQ - Secondary Uses of Data as it relates to quality reporting
• Jason Bonander, CDC - Secondary Uses of Data as it relates to Public Health Services

General Materials:
• Agenda
• Essential Vendor Privacy Policy Components
• Suggested Framework Options
• Loonsk - Nationwide Health Information Network: "Consumer Services" in the 2007 Trial Implementations

General Materials:
• Agenda
• Cronin - Overview of Health Information Exchanges
• Parente - Towards Consumer Empowerment: What Can Medical Banking Do?
• Casillas Script - Medical Banking Project
• Casillas Presentation - Medical Banking Project
• Chin Report - Review of the PHR Service Provider Market: Interoperability and Data Mobility
• Chin Presentation - Review of the PHR Service Provider Market: Interoperability and Data Mobility
• Mandl and Crawford - Personally Controlled Health Records in a National Health Information Network
• Lansky - The Role of Data Intermediary Services in Connecting Consumers to the NHIN
• Downs - PHRs: The Roles of Data, Applications, and Intermediaries
•  Ball and Gold - Banking on Health: Personal Records and Information Exchange (available in PDF only, 366 kb)
•  Connecting for Health - A Common Framework for Networked Personal Health Information (available in PDF only, 1.64 mb)

General Materials:
• Agenda
• Chin - Altarum Institute Presentation on Privacy Policies
• Updated Altarum Institute PHR Privacy Policy Report (PDF only, 238 KB)
• List of PHR Vendors Reviewed in Altarum Institute PHR Privacy Policy Report
• Crosswalk of Privacy Policy Components and Proposed Privacy Principles
• NCVHS PHR Recommendations Report (PDF only, 365 KB)
(See recommendations 3-7 on pages 20-22.)
• Proposed principles for CE PHR Breakthrough Project

General Materials:
• Agenda
• Description of Consensus Process
• CCHIT Presentation on PHR Standards & Certification
• CCHIT Testimony on Standards & Certifications
• List of Benefits and Concerns about Certification
• HITSP Summary of Consumer Empowerment Standards (PDF only, 196KB)
• Tabled Recommendations
• Draft AHIC Recommendations Letter
• Final AHIC Recommendations Letter from January 23, 2007
• VA MyHealtheVet Update

General Materials:
• Agenda
• AHIC Recommendations Letter
• Stanley Chin – PHR Privacy and Security Policy Review
• PHR Privacy and Security Policy Review (.PDF only, 163KB)

Meeting Agenda:
Word format only

Rankings:
PDF format only

General Materials:
Agenda (Word only)
Draft Recommendation to the AHIC (Word only)
Stanley Chin Presentation (.PPT only)
Stanley Chin Paper: Altarum - Environmental Scan of the PHR Market (.PDF only)
William Crawford & Kenneth Mandl Presentation (.PPT only)
Crawford & Mandl Paper: "How to keep electronic medical records accessible but private." (.PDF only)
Crawford & Mandl Paper: Health Information Altruists (.PDF only)
Stephanie Fenton Presentation (.PPT only)

Meeting Agenda:
Word format only

Sept. 18th Consumer Empowerment Meeting Summary
Word format only

Draft Visioning Matrix:
Word format only

Definition of Functional Categories:
Word format only

Markle Foundation July 2004 - PHR Final Report:
PDF format only

Prioritization Ranking Tool Summary:
Word format only

Meeting Agenda:
Word format only

PHRs: Critical Success Factors:
Paul Tang (.PDF only)

Draft Visioning Matrix:
Word format only

Prioritization Ranking Tool Summary
Word format only

Panel 1 - PHR Consumer Engagement and Literacy:
Marc Boutin (.PDF format)
Marc Boutin (Word format)
Cynthia Baur (.PPT only)
Michael Leu (Word only)
William Smith Academy (.PPT only)

Panel 2 - PHR Incentive Policy Levers:
William Crawford (Word only)
Mary Ellen Zipper (.PDF only)

Public Testimonies:
Richard Dick - Healthcare Informatics (Word only)
Linda Mills - Florida Governor'sWorking Group on the A.D.A. (Word only)
Don Mon - AHIMA (Word only)
2006 eRisk Guidelines (Word only)
PeopleChart - Standardized Fees on Medical Record Copies (Word only)
PeopleChart - Equal Opportunity in Interoperability (Word only)

Meeting Agenda:
Word format only

Summary of Testimony from July 27 Hearing:
Excel format only

Consumer Empowerment workplan:
.PDF format only

Prioritization Tool:
.PDF format only

Meeting Agenda:
.PDF format
Word format

Federal Register Notice:
.PDF only

JAMIA PHR Article:
.PDF only

HIMSS PHR Survey:
.PDF only

"Discussion About Definition of Personal Health Records (PHR)," Daniel Sands:
.PPT only

"Banking on Health." Ball and Gold. JHIM, Spring 2006:
.PDF only

eRisk for Providers, Medem, March 2001:
.PDF only

Agarwal PHR Report AMIS Chapter:
.PDF only

Agarwal PHR Article, May 2006:
.PDF only

Panel 1 - PHR Clinical, Patient, and Consumer Perspectives - written testimony:
University of Maryland - Agarwal
Whatcom Region-St Joseph Hospital - Marc Pierson
SharedHealth - Jana Skewes

Panel 2 - Payers and Purchasers - written testimony:
IBM - Jane Barlow
PepsiCo - Greg Heaslip
Greater Omaha Packing - Kathleen Krantz
Dell - Kathleen Angel
Carmella Bocchino

Panel 3 - Standards Development - written testimony:
HITSP - Elaine Blechman
Donald Mon HL7 PHR

Panel 4 - PHR Companies - written testimony:
FollowMe - Cynthia Solomon
WebMD - Philip Marshall
Medem - Edward Fotschs
SimplyWell - James Canedy

Public Testimonies:
AAP - Alan Zukerman
Amanda Atkins
Cerner
Dale Ann Micalizzi
Deborah Beranek Lafky
ICW Mark Wallin
Lynne Brengman
Matt Schmidt
MedCommons - Adrian Gropper
National Consumer League
SHIRE - Russell Davis

Meeting Agenda:
.PDF format
Word format

Workgroup Roadmap:
.PPT format only

NCVHS PHR Report:
.PDF format only

Meeting Agenda:
.PDF format
Word format

Meeting Agenda:
.PDF format
Word format

Draft Recommendation Letter:
.PDF format
Word format

Appendix A - Background for Recommendation 1.0:
.PDF format
Word format

Appendix B - Background and Rationale for Recommendations 2.0 and 2.1:
.PDF format
Word format

Meeting Agenda:
.PDF format
Word format

Consumer Matrix Regional Data:
.PDF format
Word format

HIT - Research Criteria:
PowerPoint format
Text Slide Descriptions

HIT - Work Plan:
PowerPoint format
Text Slide Descriptions

Meeting Agenda:
.PDF format
Word format

Proposed Principles for Consumer Empowerment Breakthrough:
.PDF format
Word format

Options Paper--Data Elements and Data Sources:
.PDF format
Word format

Options Paper--Breakthrough Models:
.PDF format
Word format

Options Paper--Population:
.PDF format
Word format

Matching Patients and their Data-Background Paper:
.PDF format
Word format

Policy Issues and Barriers:
.PDF format
Word format

Appendix to the Data Elements and Sources Paper:
.PDF format
Word format