THE ROLE OF CONSUMERS IN THE SUCCESS OF THE CONSUMER DRIVEN HEALTHCARE MOVEMENT by VAIL MARIE MILLER, MBE Submitted in partial fulfillment of the requirements For the degree of Doctor of Philosophy Dissertation Adviser: Dr. Patricia Marshall Department of Bioethics CASE WESTERN RESERVE UNIVERSITY January, 2010 CASE WESTERN RESERVE UNIVERSITY SCHOOL OF GRADUATE STUDIES We hereby approve the thesis/dissertation of Vail Marie Miller candidate for the PhD degree *. (signed) Patricia Marshall (Chair of the committee) Mark Aulisio Nahida Gordon Stuart Youngner (Date) October 30, 2009 *We also certify that written approval has been obtained for any proprietary material contained therein. Table of Contents LIST OF TABLES ............................................................................................................... 6 LIST OF FIGURES .............................................................................................................. 8 LIST OF FIGURES .............................................................................................................. 8 ABSTRACT ..................................................................................................................... 10 CHAPTER I: INTRODUCTION AND STATEMENT OF THE PROBLEM ......... 12 CHAPTER II: BACKGROUND ................................................................................... 17 A. HISTORY OF HEALTH INSURANCE AVAILABLE IN AMERICA...................................... 17 B. THE EMERGENCE OF CONSUMER DRIVEN HEALTH PLANS ........................................ 20 C. INFOMEDIARIES ......................................................................................................... 23 D. HEALTH LITERACY................................................................................................... 24 1. The Demands for Health Literacy......................................................................... 24 2. Literacy Levels...................................................................................................... 25 3. Socioeconomic Factors......................................................................................... 28 4. Cultural Factors.................................................................................................... 30 5. eHealth Literacy.................................................................................................... 32 E. THE DIGITAL DIVIDE ................................................................................................. 35 1. Defining the Digital Divide................................................................................... 36 2. Contributing Factors ............................................................................................ 37 3. The Divide’s Potential Effects on eHealth............................................................ 40 CHAPTER III: THEORETICAL FRAMEWORKS .................................................. 41 A. HEALTH ECONOMICS................................................................................................. 41 1 B. AUTONOMY IN A CONSTITUTIONAL LIBERAL FRAMEWORK ...................................... 45 1. Patient Autonomy and Informed Consent............................................................. 46 2. Parallels between Informed Consent and Informed Choice for CDHP Enrollees50 C. USABILITY ENGINEERING .......................................................................................... 54 1. Usability Approaches............................................................................................ 56 2. Use of Usability Testing for eHealth .................................................................... 60 CHAPTER IV: RESEARCH DESIGN AND METHODS.......................................... 61 A. SAMPLE POPULATION, RECRUITMENT, AND INFORMED CONSENT............................. 61 1. Sample Population................................................................................................ 61 2. Recruitment........................................................................................................... 62 3. Informed Consent.................................................................................................. 63 B. USABILITY EVALUATION........................................................................................... 64 1. Predictive Cognitive Walkthrough........................................................................ 64 2. Observational Usability Testing ........................................................................... 65 3. CDHP Tasks for Evaluation ................................................................................. 69 C. PARTICIPANT DEMOGRAPHIC SURVEY ...................................................................... 82 D. DATA ANALYSIS ....................................................................................................... 83 1. Qualitative Methods.............................................................................................. 83 2. Quantitative Analysis............................................................................................ 84 CHAPTER V: ANALYSIS OF OBSERVATIONAL USABILITY TESTING: HEALTHCARE CONSUMERS’ ABILITY AND INABILITY TO CONQUER THE INFORMATION ASYMMETRY ................................................................................. 86 A. QUALITATIVE ANALYSIS........................................................................................... 86 2 1. Use of the Internet................................................................................................. 87 2. Use of Search Engines ......................................................................................... 88 3. Website quality assessment................................................................................... 90 4. Lack of Attention to Detail.................................................................................... 92 5. Cultural Differences.............................................................................................. 95 6. Use of Infomediaries............................................................................................. 97 7. Use of Government Websites .............................................................................. 100 8. Searches in First Language ................................................................................ 100 9. Doctor Rating Sites............................................................................................. 103 10. Drug Price Comparison Sites ........................................................................... 105 11. Utilization of the Information Provided by Internet Searches.......................... 107 B. QUANTITATIVE ANALYSIS....................................................................................... 109 1. Descriptive Statistics........................................................................................... 109 2. Correlations and T-Tests .................................................................................... 110 3. Linear Regression Models .................................................................................. 113 CHAPTER VI: HOW CONSUMER FRIENDLY ARE CONSUMER HEALTH INFOMEDIARIES AND WHO ARE THEY FRIENDLY TO? .............................. 115 A. UNDERSTANDABILITY OF INFORMATION ................................................................. 115 B. CONSISTENCY OF RESULTS PRODUCED ACROSS SEARCHES .................................... 116 C. WHO USES INFOMEDIARIES? ................................................................................... 122 3 CHAPTER VII: PRODUCING PRUDENT POLICIES WITH PRINCIPLES..... 124 A. PROMOTION OF AUTONOMOUS DECISION-MAKING................................................. 124 B. MORE JUST DISTRIBUTION OF EHEALTH RESOURCES.............................................. 128 CHAPTER VIII: IS THE NATION READY FOR CONSUMER DRIVEN HEALTH PLANS? CONCLUSIONS AND RECOMMENDATIONS ................... 131 A. INFORMATIONAL GOVERNMENT WEBSITES............................................................. 131 1. Complexity of Documents ................................................................................... 132 2. Don’t Try to Reinvent the Wheel......................................................................... 133 B. CALL FOR INCREASED SOCIAL RESPONSIBILITY FOR SEARCH ENGINES................... 136 C. SUGGESTED REDESIGNS FOR COMMERCIAL HEALTH INFOMEDIARIES..................... 138 D. PUBLIC CAMPAIGN FOR BETTER EHEALTH LITERACY............................................. 140 E. WILL CONSUMER DRIVEN HEALTHCARE CURE WHAT AILS US? ............................ 142 APPENDICES............................................................................................................... 144 APPENDIX A1: INFORMED CONSENT DOCUMENT IN ENGLISH...................................... 145 APPENDIX A2: INFORMED CONSENT DOCUMENT IN SPANISH ...................................... 149 APPENDIX B1A: EHEALTH LITERACY SCALE IN ENGLISH............................................ 153 APPENDIX B1B: EHEALTH LITERACY SCALE IN SPANISH ............................................ 155 APPENDIX B2A: DEMOGRAPHICS SURVEY IN ENGLISH................................................ 157 APPENDIX B2B: DEMOGRAPHICS SURVEY IN SPANISH ................................................ 160 APPENDIX C1A: WHAT IS A “HIGH DEDUCTIBLE HEALTH PLAN”? IN ENGLISH........... 163 APPENDIX C1B: WHAT IS