FNHSO Panorama Data Governance Forum Regular Forum Meeting Nov 10, 2015

Agenda Roll-call Items from Oct 2015 Panorama Data Governance Committee Meeting ISA Compliance Policy and Procedure Non-reportable CD data decision document Data Access Request: ASQ-EDI Research Project (UBC) Review: updates to Data Access Request documents Use Notification: QUEST evaluation (Dr. Gina Ogilvie) Updating eHealth conformance reports and action plans Status of Inactive Clients and BCCDC Data Access Request to support coverage reporting analysis Roundtable review (i.e. future agenda items; other items; etc.)

Role Call Na’kazdli KDC Simpcw TCHSS Ktunaxa WFN Tla’amin Splatsin OKIB NTC Seabird Saulteau Cowichan Scw’exmx Nazko Pauquachin ITHA

ISA Compliance policy and Procedure Policies and procedures refined Compliance assessment tool updated Work will begin this week with FNHSOs to assess compliance using the new tool We will stagger assessment support based on sequence which FNHSOs gained access to Panorama

Non-Reportable CD Data Decision Document Direction appears to be to not include non-reportable CD data in stewardship scope at this time In effect, this means that Panorama is not a source for those seeking non-reportable CD data for purposes beyond direct service delivery

Data Access Request: ASQ-EDI Research Project (UBC) Refer to slides…

Panorama Data Request for Research “Linking Early Developmental Screening Data to Kindergarten Teaching Ratings on Developmental Health” (ASQ-EDI Project) Principal Investigator: Dr. Martin Guhn, Human Early Learning Partnership (HELP), UBC Presented to the PDGC October 27, 2015

Project Summary Objective: BCY Panorama Project Project Summary Objective: Examine which child-level characteristics at ages 6 / 12 / 18 months are predictive of developmental strengths/needs at kindergarten age. Using: Data linkage of “Ages and Stages Questionnaire” (ASQ) data, perinatal/child health assessment data, maternal health assessment data with Early Development Instrument (EDI) data (via Population Data BC) Entire population of children from one geographic region of BC (Interior Health) Research and Request Details: See document “ASQ-EDI Data Access Form Responses Oct 6-15”

Additional Variables Original Request Amended Request Select ASQ variables (pp. 3-4) All remaining ASQ variables Perinatal/child health assessment variables (pp. 4-6) Maternal health assessment variables (pp. 4-6) Time period: Jan 1 2006- Dec 31 2008 Same time period IHA geographic region Same geographic region REB#: H13 01111 REB#: H13 01111 (updated with additional variables) Originally approved by iPHIS Data Governance Council, May 30 2014 Seeking approval from PDGC for additional variables Data linkage using Population Data BC Same linkage process

Data Linkage Process Linkage will be completed by Pop Data BC staff BCY Panorama Project Data Linkage Process Linkage will be completed by Pop Data BC staff Panorama data will be securely transferred to Pop Data BC servers by the Panorama Data Custodian Linkage with EDI data performed by Pop Data BC staff, identifiable data will be removed Assigned researchers will have access to de-identified data through the Pop Data BC Secure Research Environment (SRE) De-identified data cannot be removed from the SRE; only analysis derived from the data can be extracted If Panorama Data Governance Council approves: ISA between PHSA (data custodian) and PopDataBC will be developed and approved prior to secure transmission of data to PopDataBC

Review: Updates to Data Access Request Documents See slides…

Updates to the Data Access Request Process Ciaran Aiken, Panorama Secretariat Presented to the PDGC October 27, 2015

The Data Access Request Process BCY Panorama Project The Data Access Request Process ASKING FOR DATA All data requests for Panorama Data must complete the specified Data Access Request Form: (1) for Research or (2) Surveillance / Program Evaluation / other purposes PROCESSING THE DATA REQUEST All external data requests for Panorama data flow through the BCCDC data access request page (central intake for Panorama, BCCDC and PHMRL / Public Health Labs data requests) Data request form is reviewed and clarified as necessary with the requester Data request form and other applicable documentation (e.g. REB submission, REB approval) COMMITTEE REVIEW AND APPROVAL Request added to our monthly DGC agenda Subsequent clarification with the researcher, as necessary POST APPROVAL Drafting and completion of any Information Sharing Agreements/Research Agreements, as necessary Data transmitted to requester

Updates to the Process Updates Why? Change #1: Creation of a single, integrated Data Access Request Form: for Panorama, BCCDC and PHMRL (Public Health Labs) Streamlining: currently 4 separate forms, all very similar + based on an original BCCDC form More user friendly: less confusion over which forms to fill out One request form, multiple approvals: eliminates need to complete multiple forms for multiple data requests Change #2: Addition of a Terms and Conditions document Increased control of data: clearly outlines responsibilities of requester accessing, handling Panorama Data Reduces agreement development: covers all uses of aggregate and de-identified data provided, the majority type of data request we get. Streamlining: User signature on DAR means they agree to the Terms and Conditions NOTE: requests for potentially identifiable or fully identifiable data may still require more comprehensive agreement

Use Notification: QUEST Evaluation

Conformance Reports and Action Plans FN PIP Team has begun process to support annual review, update and submission to MoH HPLS

Status of Inactive Clients and BCCDC Data Access Request to support coverage reporting analysis Update on progress

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