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 ContentsFront MatterExecutive Summary1 Introduction2 Human Subjects Protection and Health Services Research in FederalRegulations3 Best Practices for IRB Review of Health Services Research Subjectto Federal Regulations4 Best Practices for IRB or Other Review Board Oversight of HealthServices Research Not Necessarily Subject to Federal Regulations5 Recommendations for Next StepsReferencesAcronyms and AbbreviationsAppendix A Study ActivitiesAppendix B Institutional Review Boards and Health Services ResearchData Privacy: A Workshop SummaryAppendix C Protecting the Health Services Research Data of MinorsAppendix D Confidentiality of Health Information: InternationalComparative ApproachesAppendix E Biographical Sketches