This page presents a draft of the Bloorview Research Institute Research Data Management Strategy.
Executive Summary
In response to the Tri-Agency Research Data Management Policy and its requirements, the Bloorview Research Institute Institutional Research Data Management Strategy (RDM) has been developed. This strategy will outline the direction for expected research data practices, support services, and resources.
The RDM Strategy is consistent with Holland Bloorview Policies and Procedures, Bloorview Research Institute's Standard Operating Procedures (SOPs) and Tri-agency policies and requirements including the Tri-Agency Research Data Management Policy, Tri-Agency Framework: Responsible Conduct of Research (2021), and the Tri-Agency Statement of Principles on Digital Data Management.
Scope
The RDM strategy applies to all researchers, including students, and staff who are conducting research under the auspices of the Bloorview Research Institute, regardless of funding source.
Research Data Management Principles
The Bloorview Research Institute Research Data Management Strategy is in alignment with the research data management principles shared by the University of Toronto affiliated institutions.
These Principles encompass the following values:
- promote research integrity and excellence
- recognize the value of data
- encourage the implementation of data management plans
- facilitate long-term access through data deposit
- reflect institutional practices and standards
- honour indigenous community-driven principles
- strengthen partnership and collaboration
- integrate excellence in all disciplinary approaches
- safeguard confidential and sensitive data
- reflect through communication and engagement opportunities
- provide infrastructure that supports diverse and complex programs of research
- ensure support services are available
- commit to advocacy and support for researchers’ needs learn
More about the Research Data Management Principles.
Institutional Commitment to Research Data Management
The Bloorview Research Institute is internationally recognized for its world-leading applied and client and family-centered research, dedicated to improving the lives of children with disabilities locally and around the globe. BRI is committed to excellence throughout all research activities and acknowledges that the proper management and handling of data is a fundamental element of high research quality and integrity. The Bloorview Research Institute Research Data Management Strategy outlines the institutional commitment to the adoption of responsible practices related to the management of data that are created, collected, and used throughout research endeavours at or under the auspice of the Bloorview Research Institute.
Terms and concepts used through this document are in alignment with Bloorview Research Institute policies and the definitions contained in the Tri-Agency Research Data Management Policy and FAQs and the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans (TCPS 2), and include the following:
Community – A group of people with a shared identity or interest that has the capacity to act or express itself as a collective. A community may be territorial, organizational, or a community of interest.
Definition adapted from the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans (TCPS 2)
Confidential data – Information subject to ethical and/or legal responsibilities of individuals or organizations to safeguard information entrusted to them from unauthorized access, use, disclosure, modification, loss or theft.
Data Deposit – refers to “when the research data collected as part of a research project are transferred to a research data repository. The repository should have easily accessible policies describing deposit and user licenses, access control, preservation procedures, storage and backup practices, and sustainability and succession plans. The deposit of research data into appropriate repositories supports ongoing data-retention and, where appropriate, access to the data. Ideally, data deposits will include accompanying documentation, source code, software, metadata, and any supplementary materials that provide additional information about the data, including the context in which it was collected and used to inform the research project. This additional information facilitates curation, discoverability, accessibility, and reuse of the data”.
Definition adapted from the Tri-Agency Research Data Management Policy, Frequently Asked Questions, Government of Canada 2021.
Research data – Data that are used as primary sources to support technical or scientific enquiry, research, scholarship, or creative practice, and that are used as evidence in the research process and/or are commonly accepted in the research community as necessary to validate research findings and results. Research data may be experimental data, observational data, operational data, third party data, public sector data, monitoring data, processed data, or repurposed data. What is considered relevant research data is often highly contextual and determining what counts as such should be guided by disciplinary norms.
Definition from the Tri-Agency Research Data Management Policy and FAQs
Research data management – Research data management (RDM) refers to the processes applied through the lifecycle of a research project to guide the collection, documentation, storage, sharing and preservation of research data.
Definition from the Tri-Agency Research Data Management Policy and FAQs and adapted from the Digital Research Alliance of Canada
Sensitive data - Information that must be safeguarded against unwarranted access or disclosure. Sensitive data includes any information relating to an identified or identifiable natural person, organization or entity. May include:
- Personal information
- Personal health information
- Educational records
- Customer records
- Financial information
- Criminal information
- Geographic information (e.g., detailed locations of endangered species)
- Confidential personnel information
- Information that is deemed to be confidential; information entrusted to a person, organization or entity with the intent that it be kept private and access be controlled or restricted.
- Information that is protected by institutional policy from unauthorized access
Definition from the Digital Research Alliance Sensitive Data Toolkit – Glossary (PDF)
Vulnerability – A diminished ability to fully safeguard one's own interests in the context of a specific research project. This may be caused by limited decision-making capacity or limited access to social goods, such as rights, opportunities and power. Individuals or groups may experience vulnerability to different degrees and at different times, depending on their circumstances.
Definition adapted from the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans (TCPS 2)
Institutional Research Data Management Strategy
We Welcome Your Feedback
Comments related to the Bloorview Research Institute Research Data Management Strategy can be submitted using an online feedback form. Responses to the survey will be reviewed every six months by the Research Operations office from the date of publication of this document. Ongoing feedback received from this survey or other avenues will be used for further iterations of the institution’s strategy and to determine emerging needs of the research community.
