Protecting Data Privacy in Health Services Research

Executive Summary; Introduction; Privacy and Research; Health Services Research; Benefits of HSR; Risks of Harm from HSR; Background and Policy Context; Project and Scope; Outline of Report; Human Subjects Protection and Health Services Research in Federal Regulations; IRBs and Human Subjects Protection; Previous Studies of IRBs; Human Subjects Protection in HSR; Principles and Practices; Best Practices for Irb Review of Health Services Research Subject to Federal Regulations; Best Practices for Irb or Other Review Board Oversight of Health Services Research not Necessarily Subject to Federal Regulations; Recommendations for Next Steps; References; Acronyms and Abbreviations; Appendixes; A Study Activities; B Institutional Review Boards and Health Services Research Data Privacy; A Workshop summary; Executive Summary; Introduction; Workshop Summary; References; Addendum A - Workshop Speakers; Addendum B - Workshop Participants; C Protecting the Health Services Research Data Minors Ross A. Thompson; D Confidentiality of Health Information: International Comparative Approaches; Bartha Maria Knoppers; E Biographical Sketches