A Clinical Data Repository (CDR) collects clinical data such as demographics, laboratory results, radiology images, admissions, transfers, and diagnoses from various clinical sources like the Connected Health Record and the current generation electronic medical records or laboratory systems in use now to provide a full picture of the clinical data reflecting the care a patient has received. The CDR will standardize the clinical data from these sources in a unified FHIR-based data model and then provide data, under proper security, privacy, and confidentiality frameworks, in a much more efficient way for these use-cases. The CDR seeks to unify clinical data from our current systems (known as CDR Archive Data) as well as the future and ongoing data generated from the Connected Health Record. The CDR provides a single source of truth of clinical data to drive operational and research initiatives.
The Connected Health Record (CHR) is the new electronic health record for the Centre-Ouest-de-l’Île-de-Montréal (CIUSSS) that will provide a unified digital patient health record. The CHR will replace many of the clinical software platforms currently in use. CDR unifies the clinical data from the Jewish General Hospital (JGH) current systems (which will in the future be decommissioned, thus this data will be known as CDR Archive) as well as the future and ongoing data generated from the Connected Health Record, once launched in late 2025.
FHIR (Fast Healthcare Interoperability Resources) is a widely adopted standard for healthcare data exchange, developed by HL7 (Health Level Seven International). It was created to simplify the sharing of healthcare information between different systems, enabling faster, more efficient, and standardized data interoperability. FHIR combines the best features of previous healthcare data standards (such as HL7 v2 and CDA) with modern web technologies, making it easier for developers to build and integrate healthcare applications.
At its core, FHIR represents healthcare data as Resources, which are modular components like patient records, lab results, and clinical observations. These resources can be exchanged between systems via APIs, making FHIR adaptable to various use cases, from large hospital systems to mobile health apps. SmileCDR, a robust platform for managing FHIR data, leverages this standard to enable seamless access and consumption of healthcare data across different stakeholders.
The LDI vision is to advance health and social sciences knowledge and practices through excellence in research, teaching, and innovation. Within this context we recognize the exceptional and unique importance of the quality and integrity of the research data throughout its lifecycle and therefore are committed to developing and promoting a Research Data Management (RDM) Strategy aligned with word-class practices. We will build on areas of strength and expertise, improving tools, technologies, and services to allow our research community to achieve this goal. The LDI encourages a cost-efficient approach, and we will leverage our relationship with the Centre intégré universitaire de santé et de services sociaux du Centre-Ouest-de-l’Île-de-Montréal (CIUSSS COMTL) and McGill University to find and promote synergies, such as training strategies and content and data repositories.
The LDI will develop its RDM strategy, including its data governance policies, training, data management tools and associated technologies, in accordance with the following guiding principles:
Our consultancy, offered as part of the Information Management Systems (IMS), provides strategic and technical guidance on data management and integration. We help implement tailored solutions for your data projects, with expertise such as system architecture and FHIR interoperability.
As part of our services, our team collaborates closely with your project team to develop custom data connectors tailored to your project needs. These connectors can be implemented, to retrieve data from the CDR, for example, based on message queuing or bulk data extraction to enable data transfer to your file server, repository, or other storage solutions.
It is important to recognize that the risk of introducing bias into research data and management exists throughout the data lifecycle. As such, Equity, Diversity and Inclusion principles should be fully integrated in the RDM strategy and guiding principles.
Ensuring that the unique rights, interests and circumstances of the First Nations, the Métis Nation and Inuit are respected by adopting a distinction-based RDM approach for research involving Indigenous communities and their data (e.g., OCAP®4 and CARE5). (McGill University – Draft Research Data Management Strategy)
In accordance with the Fonds de recherche du Québec and Tri-Agency policies, research results should be made as open as possible and as closed as required to facilitate access and reuse by the scientific community. Data management plans should always include metadata that allows future users to access, understand and reuse the data. The metadata should be kept in accordance with best international practices, such as the FAIR Guiding principles (Findable, Accessible, Interoperable and Reusable).
Data management practices are so varied across research fields that a “one size fits all” approach could not address important issues and might be ineffective. Therefore, the LDI will promote a flexible RDM model that is adaptable to all research domains recognizing that different fields have different needs. (McGill University – Draft Research Data Management Strategy)
As indicated by the Tri-council statement of principles on digital data management: “Data management should be efficient and cost effective. All data need to be managed, but not all data need to be shared or preserved – costs and benefits of doing so should be considered in the data management planning process” (Tri-Agency Statement of Principles on Digital Data Management)
The LDI will strengthen the communication and coordination with McGill University, establishing more streamlined RDM workflows and processes. The LDI will also seek synergies with the CIUSSS COMTL when possible while leveraging relationships with stakeholders at the institutional, provincial, national, and international levels.
When accessing data from the CDR, it is essential to ensure that data access is aligned with the specific needs of each project. The scope of data is restricted based on the requirements and objectives of the individual project, adhering to data governance policies and privacy regulations. This ensures that only relevant data is accessed and shared, minimizing the risk of overexposure and ensuring compliance with ethical and legal standards. Researchers, management, and clinical operations teams can consume data from a Clinical Data Repository (CDR) through file-based access or subscription-based delivery.
FHIR: Fast Healthcare Interoperability Resources
For more information consult: https://hl7.org/fhir/R4/index.html
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