The Pan-Canadian Real-world Health Data Network (PRHDN)

Transcription

1 The Pan-Canadian Real-world Health Data Network (PRHDN) Building a SPOR National Data Platform April 2018 Consultation Deck Kim.mcgrail@ubc.ca Nominated Principal Investigator for the PRHDN Submission to the CIHR Call for a SPOR National Data Platform

2 PRHDN PARTNERS: Canada s small number of large single payer health systems combined with existing national and provincial centres/networks constitutes a data advantage

3 Vision Decision makers and researchers across Canada access and use harmonized and complementary data in multi-province studies and analysis Mission The PRHDN will create coordinated access to distributed data infrastructure that is built once then used by many stakeholders for a variety of purposes including: research, surveillance, benchmarking, performance monitoring to identify gaps and opportunities for improvement, multi-jurisdictional evaluations of novel interventions and inter-jurisdictional comparisons 3

4 PRHDN: Existing data assets and expertise mean that the Canadian glass is already almost full when it comes to world-class multi-province health research data infrastructure Closing this gap is a collective responsibility 4

5 PRHDN Leadership A subset of five of the PRHDN partners are collectively leading the response to CIHR s call for a SPOR National Data Platform 1) PopData: Kim McGrail (NPA and overall lead for proposal development/network operations) 2) ICES: Michael Schull, Charles Victor, Alison Paprica (Priorities and partnerships) 3) MCHP: Alan Katz, Mark Smith (Data and cyberinfrastructure) 4) CIHI: Brent Diverty (Data access development and coordination) 5) Maritime SPOR SUPPORT Unit: Ted McDonald (Partnerships) 5

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7 What is the funding opportunity? 7-year CIHR grant Requires 1:1 matching from non-federal sources Requires network and collaboration across the country Must be guided by priorities of SPOR-related researchers and entities: Networks, SUPPORT Units and Innovative Clinical Trial initiatives and affiliated researchers Registration deadline 17 April 2018 Application deadline 19 June

8 What are the objectives as outlined in the CIHR funding opportunity? Create significant efficiencies in data access. Reduce the time required for researchers to access harmonized multi-jurisdictional data single on-ramp, streamlined crossprovincial approval. Establish standards of data harmonization and linkage of high priority clinical, admin and social data to enable richer multijurisdictional studies to be conducted. Establish valid and reliable methods for linking other data (e.g., EMR data, cohorts, clinical trials) to health and social admin data. Provide innovative and ethical solutions to data access and use through patient and partner engagement. 8

9 What are our currently-defined priorities? Developing and validating consistent variable definitions to facilitate multi-jurisdictional research Developing technical infrastructure for storage, and re-use of those algorithms Creating a data access support system for cross-provincial requests Establishing strong connections, including to patients and the public and Indigenous communities Working towards shared analytic infrastructure Expanding to accommodate new data (e.g. genomics, free text, imaging, patient-reported) and new methods (e.g. AI, NLP) 9

10 PRHDN will build permanent, re-usable resources 10

11 How we are working together Leverage assets - not meant to replace existing local or pan- Canadian teams, centres or organizations which hold health and social data. Leverage knowledge/experience build on solutions pioneered by other groups in Canada (CCDSS, CNODES) and abroad (Sentinel, ADRN) Leverage partnerships use existing relationships and build new ones that can help add new forms of data, etc. Decision-making on strategic direction and priorities made by consensus where possible, with final decisions by NPA A core set of resources distributed equally across PRHDN data sites for priority development (e.g. algorithms, common data) Other resources flowing based on ability / interest 11

12 How can we help? How might a SPOR National Data Platform support research across multiple provinces? (e.g. consultation services, harmonized data...) Can we help support research priorities as you understand them, for example around specific populations (e.g. Indigenous), areas (e.g. rural, remote), conditions (e.g. diabetes, heart disease) or user groups (e.g. complex needs, end of life)? Are there partnership opportunities that can extend our collective reach / ambition? Is there anything that SPOR National Data Platform, as currently designed, will not do which would be of help to you / your network? 12

13 We would be happy to hear from you