1. FNHSO PANORAMA DATA GOVERNANCE FORUM Regular Forum Meeting April 14, 2015

2. Agenda Roll-call Updates from previous PDGC meetings Decision request on use of Panorama data in PHRDW STIBBI data mart Update on Data Retention Policy Panorama Data Request Triage Procedure Review of ISA and PDGC Policies and Procedures that enable data access safeguards Roundtable review (i.e. future agenda items; other items; etc.)

3. Role Call KDC TCHSS WFN Tla’amin OKIB NTC Seabird Saulteau Cowichan Scw’exmx Nazko Pauquachin ITHA

4. Updates from PDGC BC’s Privacy Commissioner is planning to join a PDGC meeting as an observer. This will likely occur in May 2015. Updates and refinements continue to the Panorama Data Request Triage Process and the committee is looking for feedback from First Nations Data Stewards on the PDGC on this process Related to efforts to finalize the Triage Process, meetings are scheduled with FNHA, Lower Post, YK, NHA, FN Data Steward reps on the PDGC and others to determine how to correctly incorporate Lower Post in the Panorama population health reporting and data governance models ISA Compliance model options continue to be discussed at PDGC, and between MOH and the OIPC 2 new PDGC policies have been identified as priorities for development: A “data quality” policy A “report writing” policy A Data Retention Policy has been developed and is now being reviewed

5. STIBBI Data Mart Request (PHRDW) Purpose for the Data Mart: “To link information from various data sources in order to build a comprehensive reporting tool for use by both BCPHMRL and BCCDC-CPS. The STIBBI data mart will replace the current HIV/AIDS and STI cubes, which are based on the soon-to-be retired HIV/AIDS and STI Access databases. When HAISYS retires, Panorama will be the main data source for prospective (new) HIV/AIDS case data in the STIBBI data mart; historical HIV/AIDS case data (from HAISYS) will be retained in the STIBBI data mart. The STIBBI data mart also includes HCV and TB data from iPHIS, and HCV data from laboratory systems. All data will be used for surveillance in BC summarizing trends in the province. The STIBBI data mart will also support laboratory test validation using clinical/epidemiological information trends and lab indicators or emergency pathogens.”

6. STIBBI Data Mart Request (PHRDW) Uses Requested: Monitoring, analysis, planning and program evaluation Reporting Health surveillance Support for Public Health intervention, risk assessment and evaluation Public Health policy development Data quality assurance Other important points: Request does not include “research” as a use Request clarifies in multiple locations that “…no First Nations or ethnicity identifiers (which includes a category for aboriginal) will be included.”

7. STIBBI Data Mart Request (PHRDW) Expected Outputs: Regular reports of aggregate incident counts at the Health Authority and provincial levels Indicator reports in support of STOP HIV initiative Ad-hoc reports of aggregate counts, risk factors, testing patterns, or other relevant case attributes to answer specific questions about disease trends or correlation Reports of anti-microbial resistance to PHAC from participating sentinel sites Reports for Laboratories for management, policy and public health purposes

8. STIBBI Data Mart Request (PHRDW) Expected Outcomes: Improved linkage between data sources and hence improved data quality Efficient report building mechanism with less time being spent on routine report generation for update once initial report is developed Improved access to surveillance data Improved consistency across datasets generated from surveillance data Reduced analyst time spent cleaning and preparing data sets Improved support for enhanced analysis/evaluation

9. Data Retention Policy Refer to embedded PowerPoint from March 24 PDGC meeting:

10. Data Governance Committee Panorama Data Retention March 24, 2015

11. Discussion Required Panorama is in need of a Data Retention Policy. To support the development of such a Policy, the retention periods for Panorama related data need to be determined, including: – Business Records – Quality and Risk Management Records – Health Records 11

12. Current Situation Within BC, most Health Authorities consider all health records to fall within the scope of the BC Ministry of Health Directive ordering that health records relating to tobacco and Hepatitis C litigation be retained indefinitely. The Health Care Protection Program (HCPP) is administered and delivered by the Risk Management Branch of the BC Ministry of Finance. HCPP has interpreted the Ministry's Directive as follows: – All potentially relevant documents be preserved and that Health Authorities retain, and request that hospitals and other agencies that are funded by Health Authorities, retain all patient records (see Slide 8) Yukon doesn’t have a Data Retention Policy that applies to electronic data (records are kept indefinitely). 12

13. IPC PARIS 1 Recommendations In 2010, the BC Information and Privacy Commissioner issued several recommendations as part of an investigation into PARIS, including the following 2 recommendations related to Data Retention: Records in PARIS that are no longer required for the delivery of health services should be archived on a regular and ongoing basis. A classification scheme to identify those records should be developed. Access to archived records should be strictly limited. A records retention policy should be developed and implemented for PARIS. VCH should distinguish between information collected for administrative purposes and that collected for the delivery of health care. Administrative records not related to tainted blood or tobacco use litigation such as financial eligibility information or immigration status should be subject to a shorter retention period. 13 1. Investigation Report F10-02 – Information & Privacy Commissioner for BC, March 5, 2010

14. Summary of Current Situation A Retention Policy and Schedule is required for Panorama. All health records that may be related to Hepatitis C or Tobacco Litigation in BC must be retained indefinitely. The broad scope of the Directive makes it difficult to predict which health records, or parts of an individual’s health record might be related to Hepatitis C or Tobacco litigation, which results in health care organizations applying that Directive to all health records. Records that are no longer required for the delivery of health services should be archived. Administrative records should be subject to shorter retention periods. 14

15. Policy Statements 15 Policy StatementAgree? Yes / No Justification Policies, Procedures, Supporting Documentation will be retained permanently IHA Policy VCH Policy Committee Minutes, Agendas, Reports will be retained for 7 years IHA Policy VCH Policy Contracts and Agreements will be retained for 7 years after expiry or completion of the contract IHA Policy VCH Policy General Correspondence will be retained for 7 years IHA Policy VCH Policy Incident Reports, Follow-up Reports will be retained for 7 years IHA Policy VCH Policy

16. Policy Statements 16 Policy StatementAgree? Yes / No Justification Client Demographic and Client Attribute Data will be retained 1 year following the death of the client and then archived indefinitely. Public Health related data is of value to the client throughout their life. Provides continuity of care throughout the life of an individual. Communicable Disease Investigation and Outbreak Data will be retained 1 year following the death of the client and then archived indefinitely. Family Health Data will be retained 1 year following the death of the client and then archived indefinitely. Immunization Data will be retained 1 year following the death of the client and then archived indefinitely. Inventory Data will be retained 1 year following the death of the client and then archived indefinitely.

17. HCPP Interpretation of the BC Ministry of Health’s Directive The Ministry’s directive required that all potentially relevant documents be preserved. As a result Health Authorities are required to: retain, and request that hospitals and other agencies that are funded by Health Authorities retain the following related to tobacco use: – all patient records (both inpatient and outpatient) including x-rays – all documents concerning the subject of tobacco, smoking or nicotine addiction – documents relating to regional tobacco control and enforcement and smoking cessation and prevention all documents concerning the following diseases: chronic obstructive pulmonary disease including emphysema, chronic bronchitis, and asthma cancer including lung cancer, cancer of the lip, oral cavity or pharynx, cancer of the larynx, esophagus, bladder, kidney, pancreas, and stomach circulatory system diseases including coronary heart disease, pulmonary circulatory disease, cerebrovascular disease (stroke), atherosclerosis, aortic and other aneurysms, and other peripheral vascular diseases pneumonia and influenza peptic ulcers increasing morbidity and general deterioration of health – all documents concerning the effects of the following substances insofar as they affect human health: tar, nicotine, ammonia, hydrogen cyanide, carbon monoxide, polyaromatic hydrocarbons, phenols, catechol, aldehydes, nitrogen dioxide and nitrogen monoxide, nitrosamines, micotoxins and endotoxins, and miscellaneous organics and metals (e.g., nickel, lead, cadmium, arsenic, selenium, mercury) – all research documents relating to any of the above diseases or substances 17

18. Data Request Triage Process

19. Draft Process still under PDGC review

20. ISA / PDGC Safeguards Data Governance Framework ISA Panorama Data Access Request (Surveillance & Program Evaluation) Policy and Procedure Panorama Research Policy and Procedure

21. Requests involving First Nations Data Parties which have stewardship authority over First Nations data in Panorama may access, use and disclose these data as authorized by applicable law, the Panorama Data Governance Framework and accompanying policies and procedures. Parties requesting access and use of or inclusion of First Nations data at the individual or community level for surveillance or program evaluation purposes, must consult with, and obtain a decision for use from, the appropriate First Nations Principal Data Steward. First Nations Principal Data Stewards will act as the decision rendering body on behalf of First Nations Health Service Organizations who have signed the Panorama Information Sharing Agreement, and in accordance to relationships established between their respective data stewards.

22. Research Involving First Nation Data  Where the research involves a First Nations individual or community, the First Nations Principal Data Steward(s) shall secure the approval within the particular First Nations community(ies) prior to making a final decision on the Data Access Request. The conditions under which this may occur include, but are not limited to: o research conducted on First Nations lands; o recruitment criteria that include First Nations identity as a factor for the entire study or for a subgroup in the study; o research that seeks input from participants regarding a First Nations community’s cultural heritage, artefacts, traditional knowledge or unique characteristics; o research in which First Nations identity or membership in a First Nation community is used as a variable for the purpose of analysis of the research data; or o interpretation of research results that will refer to First Nations communities, peoples, language, history or culture.  Researchers and First Nations Principal Data Steward(s) shall address privacy and confidentiality for communities and individuals early on in the Data Access Request process.  The extent to which limited or full disclosure of personal information related to the research is to be disclosed to First Nations communities, shall be addressed in the research agreement. Researchers shall not disclose personal information to First Nations communities without the participant’s consent.  Researchers must afford First Nations Principal Data Stewards or their designate an opportunity to participate in the interpretation of the data and the review of research findings before the completion of the final report, and before finalizing all relevant publications resulting from the research.  The rights and proprietary interests of individuals and communities related to the data to be collected, stored and used in the course of the research, shall be specified in the research agreement.

23. Roundtable Questions? Request for agenda items to be included in next meeting?