Research Data Capacity, Management and Sharing
The volume and flow of data, including health, health research and health-related data, is accelerating at an unprecedented rate. This wealth of data, along with increasingly sophisticated methods of analysis, affords enormous opportunities to advance knowledge, expand research opportunities, and improve health services, products and outcomes for all Canadians.
CIHR is committed to ensuring that health research and health-related data in Canada are ethically and effectively accessed, analyzed, linked, integrated, used, reused, stored and preserved. Thus, CIHR is actively involved in integrating data-related considerations into initiatives, strategies, polices, funding opportunities and other activities. This includes promoting the FAIR principles – that data are Findable, Accessible, Interoperable and Reusable – and Indigenous principles of data management, such as The First Nations Principles of OCAP® (Ownership, Control, Access and Possession) and the CARE Principles for Indigenous Data Governance (Collective Benefit, Authority to Control, Responsibility and Ethics).
CIHR respects and upholds the right of First Nations, Inuit, and Métis communities to self-determine the management of data related to research by and with these communities, and in accordance with principles they accept. This includes a right to ownership of data, and to control over whether, when and how data are shared.
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Statements, Strategic Documents and Policies
CIHR and CIHR-supported initiatives have engaged in the development of strategies and policies that guide data-related directions and expectations.
CIHR Policies, Statements and Frameworks
CIHR Health Research and Health-Related Data Framework and Action Plan
In 2017, CIHR released this framework to advance knowledge, expand research opportunities, and improve health services, products and outcomes by effectively accessing, analyzing, linking, integrating, using, reusing, storing and preserving health research data and health-related data in Canada.Tri-Agency Research Data Management Policy
In 2021, CIHR, NSERC and SSHRC launched the Tri-Agency Research Data Management Policy. The policy aims to support Canadian research excellence by fostering sound digital data management and data stewardship practices.Policies and Guidelines Developed by CIHR-funded Initiatives
Some CIHR-funded Initiatives have also developed policies to guide their research and data-sharing processes, including:
- Canadian Consortium on Neurodegeneration in Aging - Publications and Data Access Policy [ PDF (337 KB) - external link ]
- Canadian Longitudinal Study on Aging - Data Sample and Access Policy and Guiding Principles
- Health Data Research Network Canada - Guidelines for Informed Consent for Data Linkage
- International Human Epigenome Consortium - Data policies and guidelines
National Frameworks and Statements
Pan-Canadian Health Data Strategy
The Pan-Canadian Health Data Strategy aims to support the effective creation, exchange, and use of critical health data for the benefit of Canadians and the health and public health systems they rely on. The Strategy will establish a common foundation for improving Canada's ability to collect, protect and use health data so that it may inform health care and public health system adaptation, improve processes for data sharing, and help Canada prevent and respond to future health threats. CIHR is an active member of the federal and FPTI governance structure overseeing implementation of the Strategy, where CIHR brings forward considerations related to health research.International Frameworks and Statements
Global Alliance for Genomics and Health: Framework for Responsible Sharing of Genomic and Health-Related Information
In 2014, the Global Alliance for Genomics and Health introduced their Framework for Responsible Sharing of Genomic and Health-Related Information. CIHR endorses the foundational principles and core elements for responsible data sharing as outlined within this framework.Sharing Research Data to Improve Public Health: Full Joint Statement by Funders of Health Research
In 2011, CIHR became a signatory on a statement led by the Wellcome Trust that openly communicates a joint commitment to increase the availability of research data to the scientific community and to promote the efficient use of this data to further advancements in public health. The statement specifies that this increased access will be facilitated in an equitable, ethical, and efficient manner.Statement on Data Sharing in Public Health Emergencies
Building on the above, in 2016, CIHR joined over 30 global health bodies in signing an international Statement on Data Sharing in Public Health Emergencies. This statement calls for all research data collected during the Zika virus outbreak and future public health emergencies to be made publicly available as quickly and openly as possible. It was created in an effort to ensure that all global public health emergencies are informed by the highest quality research evidence and data.OECD Recommendation Concerning Access to Research Data from Public Funding
This Recommendation provides guidance to governments on enhancing access to research data. Canada is a member of the OECD and the Government of Canada adheres to the Recommendation. -
Indigenous Research Data Management
Data management in the context of Indigenous health research must be guided by Indigenous self-determination. This approach is necessary to redress the historical and ongoing power imbalances stemming from the control of information in colonial systems and to support the information needs of First Nations, Inuit, and Métis governments, communities and organizations. The directive to manage data in a responsible fashion is critical in this context and with particular attention to how this responsibility is defined and implemented.
Networks and Organizations
National Collaborating Centre for Indigenous Health
The National Collaborating Centre for Indigenous Health (NCCIH) is a national Indigenous organization established in 2005 by the Government of Canada and funded through the Public Health Agency of Canada to support First Nations, Inuit, and Métis public health renewal and health equity through knowledge translation and exchange.First Nations Information Governance Centre
The First Nations Information Governance Centre (FNIGC) is an incorporated non-profit operating with a special mandate from the Assembly of First Nations Chiefs (Resolution #48, December 2009). FNIGC envisions that every First Nation will achieve data sovereignty in alignment with its distinct world view.Global Indigenous Data Alliance
The Global Indigenous Data Alliance (GIDA) is a network of Indigenous researchers, data practitioners, and policy activists advocating for Indigenous Data Sovereignty within their nation-states and at an international level. GIDA welcomes the participation of Indigenous data users, networks, community groups, information and communications technologies providers, researchers, policymakers, planners and businesses that share its aim.International Indigenous Data Sovereignty Interest Group
A group within the Research Data Alliance, the International Indigenous Data Sovereignty Interest Group seeks to provide a highly visible international platform for Indigenous Data Sovereignty that integrates and leverages existing Indigenous Data Sovereignty groups to create new opportunities for research and outreach. The group also seeks to attract new key partners beyond our current networks, including researchers, data users and Indigenous communities.Principles, Strategies and Frameworks
CARE Principles for Indigenous Data Governance
Standing for Collective Benefit, Authority to Control, Responsibility and Ethics, the CARE Principles for Indigenous Data Governance are people and purpose-oriented, reflecting the crucial role of data in advancing Indigenous innovation and self-determination. These principles complement the FAIR principles for data management and stewardship, encouraging open and other data movements to consider both people and purpose in their advocacy and pursuits.First Nations Principles of OCAP®
A registered trademark of FNIGC, the First Nations principles of OCAP® establish how First Nations' data and information will be collected, protected, used, or shared. Standing for Ownership, Control, Access and Possession, OCAP® is a tool to support strong information governance on the path to First Nations data sovereignty. Given the diversity within and across Nations, the principles will be expressed and asserted in line with a Nation's respective world view, traditional knowledge, and protocols.Health Data Research Network Canada (HDRN) – Strategic Plan 2021-2026
One of the five goals in the HDRN Strategic Plan is to Strengthen Data Use to Improve Equity, and Support Indigenous-led Data Sovereignty. Through a number of actions, HDRN aims to build a network that makes steady progress toward meeting the governance requirements of Indigenous-led Data Sovereignty and the principles of inclusion, diversity, equity and accessibility.National Inuit Strategy on Research
The National Inuit Strategy on Research (NISR) promotes a shared understanding of the legacy of Inuit Nunangat research and connects this legacy to current research practices. NSIR includes five priority areas, one of which is to ensure Inuit access, ownership, and control over data and information. -
Ethics and Research Data Management
The increasing dominance of big data in health and health research has potential for advancing real world impact, but also bears potentially serious ethical challenges. Mismanagement of research data can raise ethical issues related to ownership, privacy, trust, and security, when freedom from unauthorized access to private data is not assured, data are inappropriately used, or ownership of data by research participants is deniedFootnote 1.
Ethical governance of research data is key to ensuring the empowerment of individuals as sovereign of their own dataFootnote 2. Key issues such as respecting individual autonomy, ensuring equity, and respecting privacy need to be consistently addressed through specific ethical frameworks, guidance principles, and tools in order to sustain public trust. This should occur through the whole research lifecycle.
The resources on this page explore the intersection of ethics and data management and provide guidance principles and tools for integrating ethical considerations into research data management practices.
Resources
Global Alliance for Genomics and Health (GA4GH)
GA4GH is a policy-framing and technical standards-setting organization, seeking to enable responsible genomic data sharing within its Framework for Responsible Sharing of Genomic and Health-Related Data.OECD Guidelines on the Protection of Privacy and Transborder Flows of Personal Data
The OECD's Guidelines Governing the Protection of Privacy and Transborder Flows of Personal Data are the cornerstone of the OECD's work on privacy. They are recognized as the global minimum standard for privacy and data protection. -
Key Partners
National
Canadian Association of Research Libraries (CARL)
CARL is the national association representing Canada's research library community. CARL supports Canada's research libraries in the advancement of research by developing data management initiatives, fostering new knowledge creation and preserving Canada's research resources.Canada Health Infoway
Canada Health Infoway is a not-for-profit organization funded by the federal government that works with the provinces and territories to implement digital health solutions that improve the healthcare and health of Canadians.Canadian Institute for Health Information (CIHI)
CIHI provides key partners with essential information on Canada's health care system and the health of Canadians. The health information included in CIHI's pan-Canadian databases acts as an enabler for key partners to perform evidence-based decision-making.CANARIE
CANARIE forms Canada's National Research and Education Network (NREN). This ultra-high-speed network connects Canada's researchers, educators, and innovators to each other and to global data, technology, and colleagues. CANARIE also funds and promotes the development of software for research and national efforts to manage data generated from research.Digital Research Alliance of Canada (DRAC)
DRAC is a federally funded, national not-for-profit that harmonizes and improves access to digital tools and services for Canadian researchers. The Alliance coordinates and funds activities in advanced research computing, research data management and research software, and as part of its work it has developed resources to support data management planning. These resources include DMP Assistant, an online tool for creating data management plans.First Nations Information Governance Centre (FNIGC)
FNIGC is an incorporated non-profit operating with a special mandate from the Assembly of First Nations Chiefs in Assembly. FNIGC envisions that every First Nation will achieve data sovereignty in alignment with its distinct world view.Health Data Research Network Canada (HDRN)
HDRN Canada's mission is to bring together people and organizations across Canada for transformative and world-leading health data use. Incorporated as a non-profit corporation in 2020, HDRN Canada connects individuals and organizations across the country to share expertise, identify opportunities for collaboration, and foster innovation in ways that respect public expectations and Indigenous data sovereignty.Statistics Canada
Statistics Canada is Canada's national statistical office. The agency ensures Canadians have the key information on Canada's economy, society and environment that they require to function effectively as citizens and decision makers.International
Committee on Data (CODATA)
CODATA is an interdisciplinary scientific committee of the International Science Council (ISC) that works to improve the quality, reliability, management and accessibility of data to all fields within the science and technology community. The Canadian National Committee for CODATA presents the Canadian perspective within international CODATA discussions.Global Alliance for Genomics and Health (GA4GH)
The GA4GH is a policy-framing and technical standards-setting organization, seeking to enable responsible genomic data sharing within a human rights framework.GO FAIR
GO FAIR is a bottom-up, partner-driven and self-governed initiative that aims to implement the FAIR data principles, making data Findable, Accessible, Interoperable and Reusable. GO FAIR advocates for the FAIR data principles and supports community-led initiatives.Research Data Alliance (RDA)
RDA is an international member-based organization focused on the development of infrastructure and community activities that reduce barriers to data sharing and exchange, and the acceleration of data-driven innovation worldwide.Scholarly Publishing and Academic Resources Coalition (SPARC)
SPARC is a global coalition of academic and research libraries that use the resources and support provided by SPARC to actively promote open access to scholarly articles, open sharing of research data, and creation and adoption of open educational resources on their campuses.World Data System (WDS)
WDS is an interdisciplinary body of the International Science Council (ISC). Its mission is to promote the long-term stewardship of, and universal and equitable access to, quality-assured scientific data and data services, products, and information across a range of disciplines in the natural, health and social sciences, and the humanities. -
Platforms and Initiatives
CIHR has made strategic investments in various initiatives with data at their core, including data platforms, data-intensive research, and tools to facilitate data management and sharing.
Platforms
Canadian Longitudinal Study on Aging (CLSA)
The CLSA is a large, national, long-term study that is following more than 50,000 Canadians who were between the ages of 45-85 when recruited, for a period of 20 years. The CLSA has completed baseline and two waves of follow-up data collection, and data are available for use by researchers.Canadian Research Data Centre Network (CRDCN)
The CRDCN is a network of secure computer laboratories located on 33 university campuses across Canada. Through the CRDCN, researchers with approved projects and security clearance have access to confidential and detailed social, economic and health-related microdata that are collected and administered by Statistics Canada.Health Data Research Network Canada – Strategy for Patient-Oriented Research Canadian Data Platform (SPOR CDP)
The SPOR CDP is focused on enabling high-quality, innovative, and multi-regional research, and its infrastructure supports improved access to data, automation of data analysis, and ongoing engagement with the public, patients, and Indigenous communities.Integrated Youth Services (IYS) Data Platform
The IYS data platform is a Canada-wide digital data platform that enables IYS to share data and knowledge with the aim of improving services and outcomes for young people in Canada.International Health Epigenetics Consortium Data Portal (IHEC)
The IHEC Data Portal provides open access to view, search and download approximately 7514 datasets relevant to health and disease. These datasets can be sorted by consortium, tissue or assay category.Population Data BC
Population Data BC (PopData) provides research access to individual-level, de-identified longitudinal data on British Columbia's 4.6 million residents. Current data holdings include 19 data sets from two federal and six provincial sources which are linkable to each other and to external data sets, where approved.SPOR Support for People and Patient-Oriented Research and Trials Units (SUPPORT) Units
SUPPORT Units are locally accessible, multidisciplinary clusters of research and policy resources. All are working on providing access to linked data and data-related support for patient-oriented research and many are conducting other data-related activities focused on improving data quality, producing data documentation, identifying new data sources, or developing data sharing agreements with partner organizations.Data-Intensive Research and Tools
Canadian Consortium on Neurodegeneration in Aging (CCNA)
The CCNA is intended to promote and strengthen interdisciplinary collaboration in the field of neurodegenerative diseases affecting cognition in aging. The CCNA is collecting cohort data within Canada and leveraging complementary platforms in an effort to share this big data and expertise nationally and internationally.Canadian Epigenetics, Environment and Health Research Consortium (CEEHRC)
The CEEHRC is driving Canadian research on the role of DNA and environmental interactions in human health and disease. By positioning Canada as a leader within the International Human Epigenome Consortium, CEEHRC is furthering the harmonization of data collection methods, and facilitating access and sharing of big data internationally.Drug Safety and Effectiveness Network (DSEN)
Established in collaboration with Health Canada and other key partners, the DSEN is designed to provide Canadian evidence on the topic of drug safety and effectiveness to regulators, policy-makers, health researchers, health professionals and patients. Through DSEN, the Canadian Network for Observational Drug Effect Studies uses state of the art methods of observational research, as well as rapid-response studies using semi-automated tools and a common data model for standardized analyses.Healthy Cities Research Initiative (HCRI)
The HCRI is a strategic program with the overarching goal of improving population and public health across Canada by ensuring urban environments are maximizing their potential for supporting health and minimizing factors that contribute to poor health.Healthy Life Trajectories Initiative (HeLTI)
The HeLTI aims to generate evidence to inform policy makers on the prevention of non-communicable diseases. Through HeLTI, CIHR is supporting the development of a registry of Canadian cohorts focused on the Developmental Origins of Health and Disease (DOHaD) approach, which in turn will foster the use of associated data and biological samples.Indigenous Health Life Trajectories Initiative (I-HeLTI)
The I-HeLTI aims to develop Indigenous focused Developmental Origins of Health and Disease (DOHaD) cohorts in collaboration with Indigenous communities. Respecting Indigenous governance and data protocols, I-HeLTI is exploring how environmental factors interact with an Indigenous child’s genes during conception, fetal life and infancy/early childhood, and the effects that has on health later in life.Pan-Canadian SPOR Network in Primary and Integrated Health Care Innovations
This network is intended to enable informed decision-making and transformation within the health care system to improve clinical, population health, health equity, and health systems outcomes. To facilitate cross-jurisdictional collaboration, a dynamic cohort has been built that includes 32 in-house datasets.Personalized Medicine and Personalized Health Initiatives
This Initiative is improving data harmonization within and among provinces, and is supporting the development of interactive 'eHealth' applications. -
Resources
The selection of resources below focuses on research data management (RDM) and sharing. For more examples, consult the Frequently Asked Questions section of the Tri-Agency Research Data Management Policy.
Research Data Management learning resources
CIHR Data Management Plan and FAIR Guidance
CIHR has developed a webpage with guidance for applicants and grant holders on how to create data management plans and make research data FAIR.CIHR Research Data Management learning module
CIHR has developed a learning module focusing on key themes, challenges, and considerations in RDM. This module includes information, tools and resources to support effective RDM practices.First Nations Information Governance Centre – The Fundamentals of OCAP®
The Fundamentals of OCAP® is a unique online learning opportunity developed by the First Nations Information Governance Centre in collaboration with First Nations thought leaders, subject matter experts, and online education professionals.Digital Research Alliance of Canada – RDM Services
The Digital Research Alliance of Canada works within the library and research communities to coordinate expertise, technology, and services in RDM, as well as to promote collaboration between research libraries and other data management key partners. The Alliance offers a number of bilingual learning materials, such as training modules and videos, online learning modules, and exemplar data management plans. These resources also include guidance on developing institutional RDM strategies and DMP Assistant, a tool to support researchers in developing data management plans.CODATA-RDA Schools of Research Data Science
The CODATA-RDA Data Schools program provides young researchers with data science and management skills through a short course, summer school style curriculum.Data Sharing Seminar Series for Societies
The Data Sharing Seminar Series for Societies provides information and resources to enable data sharing within research and scholarly communities.
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