1. FNHSO PANORAMA DATA GOVERNANCE FORUM Regular Forum Meeting December 8, 2015

2. Agenda Roll-call Items from Oct 2015 Panorama Data Governance Committee Meeting New data access request Decision Document: Non-reportable CD data decision document (updates) Decision Document: Security Model for Risk Factors in PHRDW CD Data Mart Data Quality Audit Findings Q2 eHealth conformance reports and action plans (update) 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 KDC TCHSS WFN Tla’amin OKIB NTC Seabird Saulteau Cowichan Scw’exmx Nazko Pauquachin ITHA Na’kazdli Simpcw Ktunaxa Splatsin

4. Panorama Data Request for Research Project Name: “Public Health Nursing: What Difference Does it Make for Priority Perinatal Women?” (PhD Thesis) Principal Investigator: Mary Hill, Phd (candidate) University of Victoria For presentation to the PDGC November 24, 2015 4

5. Research Project Summary Research Questions: (1)How does enhanced PHN contact with priority perinatal women affect breastfeeding, infant immunizations and maternal tobacco use, compared to the general population of new mothers receiving usual services? (2)How do organizational factors affect the work PHNs do to support priority perinatal women in achieving these outcomes? Data requested: De-identified line-listed (Data Custodian to perform de-identification); approx. 3800 individuals Geographic Location: 3 local health areas; 62 (Sooke) /65 (Cowichan) / 71 (Courtney); Vancouver Island Region 5

6. Summary continued Timeline: Information about mothers and their infants for births between January 1, 2009 and December 31 2010, from first prenatal contact to 24 months post partum Record Types: Notice of Birth, Postpartum Assessment Screen, EDCO, Newborn Record NWBA, ECHA Data Fields (mother’s record): Mother year of birth; infant month of birth; multip/primip; appointment type; nurse initials (coded); HLTH 184 score; tobacco use; prenatal weeks and gestation; encounter date(assigned sequence number e.g. #1, #2 etc.); appointment type Data Fields (infant’s record): Breastfeeding at Discharge; Feeding – breast milk; Feeding – formula; Feeding – mixed milk; Encounter type (assigned sequence number); nurse initials (coded); Local study – exposure to second hand smoke; Immunization agents 6

7. Supporting documents Supporting documents are found on the PDGC Sharepoint Site.  Completed Panorama Data Request Form + additional info doc  Study Protocol  Ethics Application  Certificate of Ethical Approval  Institutional Approval (VIHA)  Requested Data Fields document 7

8. Decision Document: Non-RCD Stewardship Decision Required Stewardship of non-reportable communicable disease data contained within Panorama. Decision Type (refer to the Panorama Data Governance Framework, Section 6.4) Panorama Data Governance Administration Current Situation Public health providers may, as part of providing clinical care to patients, input communicable disease (“CD”) data into Panorama that is not reportable (e.g. norovirus, genital warts). It is understood, by way of the Panorama Data Governance Framework (“the Framework”), that the Panorama Data Governance Committee is responsible for the stewardship of all data contained within Panorama (see section 3.3 of this Decision Document for examples). However, the current classifications system outlined in the Framework does not specify stewardship of non-reportable CD data. The omission of this type of data from the Framework results in a lack of procedural clarity when responding to a request for this data for a research, surveillance or program evaluation purpose. It is proposed to add a clarification statement to each of the current data request policy and procedures documents (for research, and; for surveillance/program evaluation) that clarify the review and approval procedure for data within Panorama that does not clearly fall within the defined classification model of the Framework. The following statements are designed to ensure consistency with current processes in these documents:

9. Decision Document: Non-RCD Stewardship To the Surveillance/Program Evaluation Policy and Procedure document: “Requests for Panorama Data for surveillance/program evaluation purposes that do not fall clearly within the scope of a defined data classification as set out in the Panorama Data Governance Framework shall be presented to the data steward or data stewards of the affected jurisdiction(s) for review and approval prior to the release of the Data. Requests for data of three or more jurisdictions, or for provincial level data must be reviewed and approved by the Panorama Data Governance Committee prior to the release of the Data.” To the Research Policy and Procedure document: “Requests for Panorama Data for research purposes where data does not fall clearly within the scope of a defined data classification as set out in the Panorama Data Governance Framework shall be presented to the Panorama Data Governance Committee for review and approval prior to the release of the Data. If the request is considered Internal Research, the data is to be approved in alignment with the affected party’s internal research policies and procedures.” Goals Clarify stewardship of non-reportable communicable disease data contained within Panorama.

10. Decision Document: PHRDW Risk Factor Security Decision Required Panorama’s security model protects risk factors for communicable diseases by encounter group. The issue for decision relates to whether this security model is appropriate to carry forward into the Public Health Reporting Data Warehouse, the instrument by which communicable disease surveillance is conducted. Decision Type Data Access Current Situation Risk factors in Panorama are encounter group protected. This means that a user with TB encounter group access may enter a TB-specific risk factor at the Client level (e.g. HIV). However, unless other users also have TB encounter group access (or access to that risk factor though another encounter group such as STI), that risk factor will be hidden. Risk factors in Panorama include underlying risk factors (e.g. liver dysfunction) but also specific diseases themselves (e.g. Hepatitis C) as these may directly impact clinical decision-making. Risk factors may be ‘Made Pertinent to an Investigation’, however analysis of the data currently in Panorama shows that this is almost never done as it requires extra data entry steps. Health Authorities have chosen to configure their roles and permissions in Panorama such that all clinicians in Panorama have unrestricted access to risk factors in all encounter groups so that they have a complete view of the client's clinical information. Currently, the only roles with restricted access are clerical ones.

11. Decision Document: PHRDW Risk Factor Security Current Situation (continued) Communicable disease data from Panorama flow to the Public Health Reporting Data Warehouse (PHRDW) through an ISA signed between the Panorama Data Governance Committee and PHRDW. PHRDW users of the CD mart, where identifiable Panorama records are accessed, include BCCDC and Health Authority staff (Note: FNHA does not currently have access to PHRDW). Users are principally epidemiologists and some EHOs involved in outbreak investigations. These staff have a similar need-to-know as clinicians where risk factor data is concerned. There are currently 88 health authority users of the CD Mart. 73 (83%) have been given ‘all encounter group’ access, which permits access to all risk factors already (see Appendix 1 for regional breakdown). Goals Ensure the right risk factor information is available to the right staff in PHRDW.

12. Decision Document: PHRDW Risk Factor Security Option A Allow all risk factors - no matter what encounter group they are associated with - to be viewed by any user who has encounter group permissions to view the disease. For example, if a user has permission to see CD General cases, when looking up a case of Hepatitis C, the user would be able to see a risk factor ‘TB’ that has been documented for the client, even if it is not associated with the CD encounter group in Panorama. Advantages CD surveillance, in particular complete assessment of risk factors and co-infection, is facilitated. Disadvantages Users who are not permitted to see all risk factors for a particular communicable disease should not be given access to the CD mart. Option B Build a security feature into PHRDW that mirrors the security structure in Panorama. Advantages More flexibility in assigning permissions. Disadvantages Costly; Few users would appear to benefit from this functionality. Recommendation: Option A is recommended

13. Data Quality Audit Findings: Audit #2 Report following Sept 2015 audit Presented to: Public Health Data Standards, Nov 12, 2015 Panorama Data Governance Committee, Nov 24, 2015

14. Audit Approvals In Panorama (proposed) Active auditing Quality reports run on set schedule by central resources Greater number and type of reports Leverage PH Data Standards Committee to determine priorities for audit Coordinated communication of issues back to HAs Feedback to Data Standards and PDGC quarterly Yes PDGC approval

15. Audit Process BCCDC runs audit reports quarterly – Collates results into single client view Sends results to data quality contacts – De-identified records; only Panorama IDs included Record remediation performed – Records can be marked ‘not able to be remediated’; removed from subsequent audits Audit findings reported to: – Panorama data quality contacts – Public Health Data Standards Committee – Panorama Data Governance Committee

16. Audit Details Currently, have performed two audits: – May and Sept 2015 Audits focused on demographic data (5 specific areas) – Address at time of case missing/insufficient – Gender unknown – Investigations remaining ‘open’ – PHN missing – Reported date invalid First 2 audits involved only records available in the CD mart – i.e. clients with at least one investigation created in the last 12 months Audit #3 in January 2016 – Will include all clients with investigations or encounters created in the last 12 months – Will provide AOrg information to designated quality contacts for follow-up of self-identified FN client records Small change in records included between Q1 and Q2 – DS committee recommended inclusion of influenza records in the Sept 2015 audit; limited impact on proportions

17. Overall findings ~800 records in each quarter were identified as having at least one data quality issue – In each HA, this represented between 5 and 30% of their records 3/5 HAs resolved greater than 40% of their data quality issues from Q1 to Q2 The types of data quality issues varied by Health Authority

18. % of clients with new records* in past 12 months with data quality issues? Note: Data standards requested the inclusion of influenza in the data quality audit reports in Sep 2015

19. % of May 2015 issues remaining unresolved as of Sept 2015 Note: Data standards requested the inclusion of influenza in the data quality audit reports in Sep 2015

20. Type of Data Quality Issue

21. Recommendations Stewards to meet with regional Panorama support teams to discuss findings – Encourage participation in record remediation Set internal targets for improvement – Review and modify training procedures, as necessary

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

23. Status of Inactive Clients and BCCDC Data Access Request to support coverage reporting analysis Update on progress: Data Access Request has been signed by Dr. Adams as per his role as the FNHSO Panorama Data Governance Committee Representative Analysis and client re-activation by BCCDC / PCST can now proceed Further updates will be provided as work progresses

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