1. ©Canada Health Infoway 2016 Health System Use Summit: Health Analytics for Informed Decision Making Technology and Infrastructure Enablers Joan Roch, Chief Privacy StrategistFebruary 11, 2016

2. ©Canada Health Infoway 2016 Privacy and health analytics General agreement regarding the importance and value of the secondary use of health data Legislation – supports / enables the use of health data for analysis of the health system and research, etc. – also sets expectations and obligations reinforces the role of ‘custodians’ responsible for an ‘individuals’ personal health information, including the respect for privacy, confidentiality and proper protection Challenges – ‘interpretation’ of the legislation – can be risk averse – interpretation of what constitutes suitable safeguards – anonymization / de-identification 2

3. ©Canada Health Infoway 2016 Secondary Use Big Data Analytics in Health - White Paper https:// www.infoway-inforoute.ca/index.php/resources/technical-documents/emerging- technology/doc_download/1419-big-data-analytics-in-health-white-paper-full-report “Embedding Privacy into the Design of Electronic Health Records to Enable Multiple Functionalities” http://www.ipc.on.ca/images/Resources/2012-03-02-PbD-EHR.pdf Health Information Privacy Group - Privacy and EHR Information Flows in Canada - Common understandings https://www.infoway- inforoute.ca/index.php/resources/reports/privacy/doc_download/626-privacy-and- ehr-information-flows-in-canada-version-2-0

4. ©Canada Health Infoway 2016 HIPG - Secondary Use Governance – Environmental Scan Summary of findings: Considerable variation in approaches and maturity Most have formal governance structures Mix of health authorities and eHealth Agencies – custodianship varies Most do NOT operate centralized data holdings for secondary use, however, a shift to centralized holdings is underway, including federation of holdings De-identification responsibilities and policies vary; custodians, Ministries or regional data warehouses.

5. ©Canada Health Infoway 2016 HIPG - Secondary Use Governance – Common Understandings Purpose Provide common understandings related to the governance of the secondary collection use and disclosure of PHI Foundational Principles – Authorities and clear purpose for secondary use – Sharing Information for Secondary Use Across Jurisdictions Governance for Secondary Use – Governance and Stewardship Bodies It is a common understanding that: – Jurisdictions should have governance for secondary use which is structured, has clear roles and responsibilities, and is composed of appropriate representatives, with the necessary skills and knowledge. – Pan Canadian Secondary Use Coordination – Practices to minimize the risk of Re-identification

6. ©Canada Health Infoway 2016 Summary All jurisdictions place a high value on the ability to use and share health information for secondary use Considerable variation in strategies and practices for accessibility of PHI Lack of consistency of de-identification policies within or across jurisdictions Potential for variability in privacy protection and access Adoption of HIPG common understandings for secondary use governance would: Reduce unnecessary variations within, across jurisdictions Consistent application of most effective and efficient privacy practices Increase accessibility to PHI for secondary use while reducing privacy risks

7. ©Canada Health Infoway 2016 Thank you