This team is led by Mr. Michael Harvey, a patient partner from St. John's, Newfoundland and Labrador, NL, Canada, with extensive health system expertise. He currently serves in a professional capacity, on the Pan-Canadian Health Data Strategy Expert Advisory Group, convened by the Public Health Agency of Canada and reporting to the Council of Deputy Ministers of Health.
A hub-and-spoke model
To the extent of possible, data will be stored at the Data Management Main Core (DMMC) at the Population Health Research Institute (PHRI) at McMaster University, which will be responsible for the collection, quality assurance, coordination, harmonization and interoperability to ensure the integrity and sharing of the Network's data. The DMMC will work closely with other data management centers in the network (e.g., the Hospital for Sick Children and the Montreal Heart Institute). Harmonization will include the development and implementation of common data dictionaries, common variable definitions, and standardized naming conventions.
Health data-sharing infrastructures include not only the necessary IT components, but also resources, skills and related services. While the DMMC supports the implementation of research infrastructures across the network, it is responsible for the implementation of key components related to the FAIRification of data, and with regards to the secure transfer, storage and use of sensitive data. The DMMC will build a web-based semantic framework to make data FAIR. This framework will use controlled standard vocabularies and international references to ensure that information can be interpreted consistently across projects, systems, languages (French and English) and time.
The DMMC will promote a harmonized data governance strategy, a consistent legal and regulatory framework, and develop guidelines for the de-identification of health-related data in accordance with national regulations. The DMMC will work with the Data Advisory and Policy Committee to develop specific policies to guide data access and collaborative analysis while ensuring scientific rigor, data confidentiality and privacy.