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

2. 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.)

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

4. 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

5. 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

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

7. 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

8. 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”

9. 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 Dec
Same time period
IHA geographic region
Same geographic region
REB#: H
REB#: H (updated with additional variables)
Originally approved by iPHIS Data Governance Council, May
Seeking approval from PDGC for additional variables
Data linkage using Population Data BC
Same linkage process

10. 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

11. Review: Updates to Data Access Request Documents
See slides…

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

13. 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

14. 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

15. Use Notification: QUEST Evaluation

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

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

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