Protecting Data Privacy in Health Services Research

The need for quality improvement and for cost saving are driving both individual choices and health system dynamics. The health services research that we need to support informed choices depends on access to data, but at the same time, individual privacy and patient-health care provider confidentiality must be protected. Table of Contents Front Matter Executive Summary 1 Introduction 2 Human Subjects Protection and Health Services Research in Federal Regulations 3 Best Practices for IRB Review of Health Services Research Subject to Federal Regulations 4 Best Practices for IRB or Other Review Board Oversight of Health Services Research Not Necessarily Subject to Federal Regulations 5 Recommendations for Next Steps References Acronyms and Abbreviations Appendix A Study Activities Appendix B Institutional Review Boards and Health Services Research Data Privacy: A Workshop Summary Appendix C Protecting the Health Services Research Data of Minors Appendix D Confidentiality of Health Information: International Comparative Approaches Appendix E Biographical Sketches