126 Data Sharing and Usage | Categories of Rights/Obligations Associated with Data
Personal Health Information
Personal health information is identifying information about an individual relating to their health and health care, such as:
- Clinical information
- Family history
- Health provider
- Health number
Research Data Management
Research data are primary source materials supporting your research, and can be used as evidence to validate your findings and results.
With the accelerating pace at which information can be generated and shared in today’s networked society, researchers face new considerations, opportunities and risks when working with data. Research data is a significant asset generated during the course of research, and has the potential to benefit other researchers if managed appropriately. Some research data requires added layers of security to ensure it’s safe keeping.
RDM refers to the processes applied throughout the lifecycle of a research project to guide the collection, documentation, storage, sharing, and preservation of research data.
This course is focused on the considerations related to creating (or collecting), processing, and analyzing data for research. Researchers should consider developing a Research Data Management plan during the planning stages of a research project.
(Source – Queen’s University Library – link)
Bias in Data
Data do not exist independently of the ideas, instruments, practices, contexts and knowledge used to generate, process and analyze them. Data should be considered non-neutral.
(Source – Data Ownership. Dr. Teresa Scassa. CIGI Paper No. 187)
Understanding the First Nations Principles of OCAP™: Our Road Map to Information Governance
From Dr. Oguamanam (CIGI Papers No. 234 — December 2019):
“Indigenous data sovereignty includes the capability of Indigenous peoples to analyze and interpret research results and negotiate their application as a consequential and transformative exercise of self-determined development.”
Data sovereignty in its simplest form refers to a state’s interest in exercising sovereign authority and control through laws and regulations relating to the data it collects or the data collected within or relating to its jurisdiction
Data sovereignty is viewed as a tool for resurgence.
Indigenous peoples are colonial-based structures for research and data generation in their territories to their desire for self-determination and self-governance.
Ownership, Control, Access and Possession (OCAP) governance is a principle for the conduct and modelling of research and Indigenous data sovereignty for self-determination. This is a key aspect of Indigenous peoples’ relationship with data.
Ownership refers to the relationship of First Nations to their cultural knowledge, data, and information. This principle states that a community or group owns information collectively in the same way that an individual owns his or her personal information.
Control affirms that First Nations, their communities, and representative bodies are within their rights in seeking to control over all aspects of research and information management processes that impact them. First Nations control of research can include all stages of a particular research project-from start to finish. The principle extends to the control of resources and review processes, the planning process, management of the information and so on.
Access refers to the fact that First Nations must have access to information and data about themselves and their communities regardless of where it is held. The principle of access also refers to the right of First Nations’ communities and organizations to manage and make decisions regarding access to their collective information. This may be achieved, in practice, through standardized, formal protocols.
Possession While ownership identifies the relationship between a people and their information in principle, possession or stewardship is more concrete: it refers to the physical control of data. Possession is the mechanism by which ownership can be asserted and protected.
(Source – Dr. Oguamanam. CIGI Papers No. 234 — December 2019, The First Nations Information Governance Centre – www.fnigc.ca).