HDRN Canada’s Executive Members and Leads will be presenting at the following sessions during the upcoming International Population Data Linkage Network (IPDLN) 2022 Conference. A full schedule can be found here.
Parallel Session A – Wednesday 11:30-13:00
Addressing multi-region data linkage needs through data sharing agreements – Three Canadian initiatives
Presenters: Donna Curtis Maillet, Ted McDonald
HDRN Canada and one of its provincial data centre members, the New Brunswick Institute for Research, Data and Training (NB-IRDT), are undertaking unconventional approaches to data sharing that balance legislative compliance and data access needs. Three approaches are being pursued:
- Harmonizing data sharing agreements between a national longitudinal study and 10 provincial data centres;
- Facilitating 4 individual data sharing agreements with one regional cohort of a nationwide study; and
- Coordinating data sharing between 4 provincial government departments and one national data centre.
Parallel Session B – Wednesday, 15:20-16:40
Public Engagement and other Essential Requirements for Data Trusts, Data Repositories and Other Data Collaborations
Presenters: Alison Paprica, Kim McGrail, Monique Crichlow, Donna Curtis Maillet, Sarah Kesselring, Conrad Pow, Thomas Scarnecchia and Michael Schull.
We convened an international team of more than 50 people to discuss, test, and refine 12 minimum specification essential requirements (“min specs”) for data trusts, data repositories, and other data collaborations that had been generated and published by a team of 19 Canadians in 2020. In parallel, we worked with Canada’s CIO Strategy Council to develop the voluntary standard “CAN/CIOSC 100-7 Operating Model for Responsible Data Stewardship” based on the updated min specs. To our knowledge, it will be the first standard that identifies public engagement as a requirement for data trusts, data repositories, or other data collaboratives.
Parallel Session C – Thursday 10:50-12:20
Inclusion, Diversity, Equity, and Accessibility (IDEA) in multi-regional data research: An approach to facilitating change in a distributed research environment
Presenters: Amy Freier, Alan Katz
HDRN Canada identified the need to address Inclusion, Diversity, Equity, and Accessibility and established a team committed to IDEA-informed change. An informal survey identified four areas for action including capacity building, culture shifts, information sharing, and coordinated development of policies, practices, and tools. A multi-regional team was established to move forward with this work with an emphasis on operations and research practices. We will share the process of establishing this Team and outline identified coordinated opportunities moving forward.
Parallel Session D – Thursday 14:40-16:10
Cross-jurisdictional data access processes and coordination in two countries: key learnings and innovative approaches
Presenters: Marie-Chantal Ethier, Carina Marshall, Juliana Wu, Felicity Flack
Access to cross-jurisdictional data can be beneficial to researchers but challenges exist in accessing data from different legal jurisdictions and policy environments. Two national networks in Australia and Canada will share their respective approaches to supporting the discovery of, and coordinating applications and approvals for, cross-jurisdictional data access.
Parallel Session E – Friday 10:50-12:20
A Synthesis of Algorithms for Multi-Jurisdiction Research in Canada
Presenters: Lisa Lix, Viktoriya Vasylkiv, Olawale F. Ayilara, Lindsey Dahl, Allison Poppel, Saeed Al-Azazi
Validation of algorithms to identify health conditions or service use in administrative data is time-consuming and expensive. Many algorithms are only assessed in a single jurisdiction, which may limit generalizability. We summarized algorithms captured in the open-access Algorithms Inventory developed by HDRN Canada. Algorithms included in the inventory encompass measures of population health, health service use, and determinants of health, and were validated or assessed for feasibility of implementation in two or more provinces/territories.
Advancing multi-regional research in Canada through collaboration
Presenters: Nicole Yada, Michael Schull and Kimberlyn McGrail
HDRN Canada’s foundation is its partnership of 20 pan-Canadian, provincial and territorial data organizations that together are enabling multi-regional research. This is being enriched with HDRN Canada’s development of the Canada Health Data Research Alliance (HDR Alliance). The HDR Alliance coordinates expansion of sources and types of data available while retaining organizational independence. A project-based pilot approach is underway with two large pan-Canadian, longitudinal, consented cohort studies being linked at HDRN Canada sites. In addition, a collaboration with a pan-Canadian COVID-19 clinical trials network is ensuring that clinical data are collected in ways that enables linkage with population-based administrative data.