FNHSO Panorama Data Governance Forum Regular Forum Meeting July 12, 2016

Agenda Roll-call Review of items from last PDGC meeting New PDGC Chairperson Confirmation of new First Nations Provincial Principle Data Steward Confirmation of Esk’etemc Panorama / PDGC onboarding Data access request (surveillance) – TTI Data access request (research) – Enteric Sequellae Roundtable review (i.e. future agenda items; other items; etc.)

Role Call Na’kazdli KDC Simpcw TCHSS Ktunaxa WFN Tla’amin Splatsin Sto:lo FNHA Health Protection Carrier Sekani Family Services Heiltsuk Esk’etemc KDC TCHSS WFN Tla’amin OKIB NTC Seabird Saulteau Cowichan Scw’exmx Nazko Pauquachin ITHA

PDGC Updates New PDGC Chairperson – Ciaran Aitken, Privacy Officer, BCCDC Confirmation of new First Nations Provincial Principle Data Steward Dr. Daniele Behn-Smith, PHO Aboriginal Health Physician Advisor Dr. Shannon Waters to take on Data Steward role during Daniele’s maternity leave starting late summer Esk’etemc successful onboarding

TTI Surveillance Data Request BCCDC / Canadian Blood Services Transfusion Transmissible Infection (TTI) Data Sharing Initiative TTI was made reportable in BC in 2000 under Schedule A of the CD Regulation. This data request seeks to revise the current TTI data sharing mechanism between BCCDC and Canadian Blood Services Data related to rarer diseases where blood transfusion/donation may not be routinely enquired about as part of case mgmt., will be able to be shared in a more timely and efficient manner A broader list of infections also helps to capture those diseases which are newer/emerging Info regarding diseases which are already reportable and possibly related to a TTI event can also be shared in a timely manner An automated extraction of data from Panorama and secure file transfer process allows for a timely and efficient process

TTI Surveillance Data Request Approval for data access was requested from the PDGC to enable the automated extraction of Panorama TTI-related data Canadian Blood Services would maintain privacy as per its policies and procedures (which are in compliance with all necessary standards) and only utilize the data for the purpose of identifying donors and prior donations Based on surveillance results, Canadian Blood Services may undertake actions such as: Blood product retrieval or recall Possible blood donor deferral Possible traceback investigations requiring patient or door notification

TTI Surveillance Data Request Benefits/Outcomes The goal of the analysis is to ensure, to the extent possible, the safety and security of the Canadian blood supply: Respond positively to findings in Justice Krever’s Report on the Canadian blood system, that the public health system had not been sufficiently involved in preventing HIV and hepatitis C infection transmission in the Canadian blood system Improve surveillance of infectious agents known to be transmitted as a TTI Establish a surveillance mechanism for new or emerging infectious agents that might threaten the safety of the blood supply Improve the efficiency of tracebacks or other appropriate follow-up by Canadian Blood Services Increase awareness of TTI among health care providers Contribute to better understanding of TTI epidemiology

TTI Surveillance Data Request Identifiable data being requested Data elements include names, addresses, PHN or similar identifying numbers. In order to determine if a test result reported from Panorama is from an individual who is also a registered blood donor, sufficient ID data must be provided. Variables being requested: Last Name, First Name, Age, Gender, PHN, relevant TTI test results from Panorama, data of specimen collection and/or submission Time period: Ongoing Geographic area of interest: all of BC

TTI Surveillance Data Request PDGC voting members attending the July Committee meeting voted in favor of the data request PDGC secretariat to follow up with voting members not in attendance and provide approval decision to Canadian Blood Services

Enteric Sequelae Data Request Request from Eleni Galanis, Physician Epidemiologist, BCCDC Burden of acute enteric infections and their sequelae in BC, 2005 – 2014 Enteric, foodborne, and waterborne infections pose a significant burden in the Canadian population. It is estimated that each year there are 4.0 million episodes of domestically-acquired foodborne illness in Canada. In BC, there are half a million episodes of domestically-acquired foodborne illness every year.

Enteric Sequelae Data Request Typically, enteric infections are mild and self-resolving. However, a number of these infections cause severe illness (e.g. paralysis due to botulism, meningitis due to listeriosis). In addition, some of these infections lead to chronic sequelae (e.g., hemolytic uremic syndrome due to shiga-toxin producing E. coli, Guillain-Barre Syndrome due to campylobacteriosis). Severe illness and chronic sequelae cause important morbidity and mortality in the population and are extremely costly to the healthcare system. Since enteric infections are common, these long term outcomes likely lead to a large health and economic burden which should be considered when determining priorities for prevention and control and evaluating existing programs.

Enteric Sequelae Data Request There is a paucity of evidence about the burden of severe enteric infections and their sequelae in Canada. Internationally, attempts have been made to determine this health burden through observational studies (e.g. cohort, case-control and cross-sectional) and through modeling. To date no one has used administrative data linked to reportable diseases. The purpose is to determine the health and economic burden of enteric infections, both severe acute illness and their sequelae, in British Columbia from 2005 to 2014, in order to help prioritize and evaluate prevention and control programs. The objectives are to: Determine the incidence and epidemiology of mild and severe acute illness and known sequelae Determine the healthcare utilization/cost of: mild and severe acute illness and known sequelae Identify hypothesized sequelae Determine the incidence, epidemiology and healthcare utilization/cost of all episodes of known enteric infection sequelae

Enteric Sequelae Data Request Benefits and Outcomes The study will determine the health and economic burden of enteric infections in BC in order to help prioritize and evaluate prevention and control programs in BC and beyond Time period: Sept 1 2016 – Dec 31 2020 Variables: For all reportable enteric diseases reported between 2005-2014 in BC, we are requesting: PHN, first name, last name, date of birth, sex, age at time of investigation, onset date, reported date, health authority at time of investigation, disease, etiological agent An identifiable data set is required to link with data from MSP, DAD and vital statistics data.

Enteric Sequelae Data Request PDGC voting members attending the July Committee meeting voted in favor of the data request PDGC secretariat to follow up with voting members not in attendance and provide approval decision to BCCDC

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