Evaluation of the Personal Health Record Pilot for Medicare Fee-For Service Enrollees from South Carolina

Contract No: HHSP23320045020XI

Prepared for: U.S. Department of Health and Human Services Office of the Secretary Assistant Secretary for Planning and Evaluation

Prepared by: NORC at the University of Chicago 4350 East West Highway, Suite 800 Bethesda, MD 20814

This report was prepared under the direction of Suzie Burke-Bebee, MSIS, MS, RN, Office of Science and Data Policy.

This report was prepared by NORC under contract to the Assistant Secretary for Planning and Evaluation. The findings and conclusions of this report are those of the authors and do not necessarily represent the views of ASPE or HHS.

This report is available on the Internet at: http://aspe.hhs.gov/sp/reports/2010/phrpilot/index.shtml

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How to Obtain a Printed Copy EVALUATION OF THE PERSONAL HEALTH RECORD PILOT FOR MEDICARE FEE-FOR SERVICE ENROLLEES

ACKNOWLEDGEMENTS

The National Opinion Research Center (NORC) presents this report, Evaluation of the Personal Health Record pilot for Fee for Service Medicare Enrollees. This study was funded by the Assistant Secretary for Planning and Evaluation (ASPE) and with the Center for Medicare and Medicaid Services (CMS) of the Department of Health and Human Services. The NORC project team includes Prashila Dullabh, Dan Gaylin, Randy Horton, Elizabeth Babalola, Alison Muckle, Casey Hogle, Tom Briggs, June Eichner, Karen Harris, Alycia Infante, Emily Shortridge and Jonathan Moore.

NORC gratefully acknowledges the contributions of our Project Officer, Suzie Burke-Bebee, who provided thoughtful input and guidance throughout the project. We would also like to thank Lorraine Doo, Elizabeth Holland, Chrislyn Gayhead, and Rosali Topper at CMS for their continued assistance. Additionally, NORC appreciates the ongoing guidance of the Personal Health Record (PHR) Expert Panel, comprised of twelve prominent leaders with expertise in the area of usability design, evaluation of PHR applications, PHR standards, and implementation. The members of this panel provided guidance throughout the evaluation on the approach to evaluation activities, instrument development, results interpretation and current work in PHRs. A list of the Expert Panel members is included in Appendix 1. Finally, we would also like to acknowledge the contributions made by Patrician Flatley Brennan, who served as an expert consultant to NORC on this project.

This study was approved by the NORC Institutional Review Board under protocol number 6488-02-62. For more information, please contact Prashila Dullabh, the Project Manager via phone, at (301) 634-9418 or e-mail at [email protected].

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TABLE OF CONTENTS

EXECUTIVE SUMMARY ...... 4 Background...... 4 Methods ...... 5 Results...... 5 Conclusions and Recommendations ...... 7

BACKGROUND...... 9 Overview of PHRs ...... 9 CMS PHR Initiatives ...... 10

OVERVIEW OF MYPHRSC...... 11

METHODS ...... 12 Research Questions and Objectives ...... 13 Evaluation Activities...... 14 Phase 1: PHR Environmental Scan and Background information on MyPHRSC...... 15 Phase 2: Beneficiary experiences with MyPHRSC ...... 17 Phase 3: Final Report...... 24 Study Limitations ...... 24

RESULTS...... 26 A. Discussions with MyPHRSC Contractors ...... 26 Data lifecycle...... 26 Security ...... 27 Outreach ...... 27 B. Discussion Groups with Beneficiary Users of MyPHRSC...... 28 Beneficiaries’ Backgrounds...... 28 Usability of MyPHRSC ...... 29 Utility of MyPHRSC...... 30 Potential Impact of the PHR on Health Status...... 32 Consumer Satisfaction with the PHR...... 32 Suggestions for PHR Developers ...... 32 C. Semi-Structured Interviews with Beneficiary MyPHRSC Nonusers ......