IHE Quality, Research and Public Health (QRPH) White Paper – Using IHE Profiles for Healthcare: Secondary Data Access

This document describes a standardised infrastructure that allows organisations that collect and use patient data for purposes other than patient care (such as research, education or public health) to access data and documents held by healthcare organisations and vice versa.

Such data sharing between a “Clinical Community”, the group of healthcare enterprises that work together to directly deliver patient care and require personally identifying patient information, and a ’Secondary Data Usage Community’ that is not allowed to access identifying information, requires a standard, reliable and secure de-identification process.

This document outlines how to build this standardised information-sharing infrastructure and discusses several use cases.

Main sections:

· Purpose, use cases and intended audience

· Concept of community

· Main architecture features

· Query definition and further architecture features

· Technical solutions for exemplifying use cases

· Appendix A – Privacy and ethics jurisdictional background

· Appendix B – IHE profiles for further privacy and security issues