Plain Language Glossary

Data collected with community interest and/or participation. Examples include data from community groups (e.g., social justice, non-profits) and research involving community participants.

When an informed person or their legal caregiver agrees to be part of a research project. In Canada, consent has to be free (that nobody is pressuring you to participate), informed (that you have all the details needed to make a decision), and ongoing (you can’t just say yes once, you have to keep being ok with it). (Government of Canada, 2023)

Refers to information collected. This can include facts, measurements, or observations. They can come in many forms such as text, numbers, symbols, images, videos, sound, drawings, diagrams, code, or files. (Innovation, Science and Economic Development Canada, 2021)

A group of people who have the role of saying yes or no to researchers who ask to use the data. They also make sure data is kept safe and that how it is used matches what research participants agreed to. (Cheah & Piasecki, 2020)

When older data that is not used often is stored in a specific long-term location. This is done to avoid losing the data. (CODATA Working Group, 2024)

An ongoing process of maintaining and organizing data to make sure it is safe, accessible, and makes sense to others. This can include storing it in a repository or data archive—a central online collection of data—and adding keywords or links to make it easy to find. It could also mean developing files stored with the data that explain how they were collected and what the terms mean. (National Library of Medicine, n.d.)

Documents outlining how to review data from specific subjects or file types and how to carefully organize data. Primers are created by the Data Curation Network. (Data Curation Network, n.d.)

Data deposit refers to the process at the end of a project where the collected data are stored securely in a repository, a digital storage solution or “lockbox”. A repository should keep the data safe and secure while allowing approved  individuals or groups to access the data.

Legal terms between the person who created the data and the person who wants to use it. These terms spell out what others can and can’t do with your data. This is usually selected when the researcher shares data in a public repository. Some licenses give data to the public—to be used by anyone in any way for any purpose. Other examples include asking users to credit the creator, or ensuring data is not used for commercial purposes. (Danish National Forum for Research Data Management, n.d.)

Describes a person’s ability to understand, read, and use data in many ways. It also describes the range of skills a person has with data. Skills include managing, analyzing, visualizing, and finding patterns in data. (National Library of Medicine, n.d.)

A document, usually for a specific project or program, that describes how you will collect, keep safe, and share data. A Data Management Plan is a helpful guide for researchers to follow and make sure everyone involved is on the same page. They are “living documents” created to be updated over time as a project evolves. (Innovation, Science and Economic Development Canada, 2021)

A completed plan for a real or fake project. Researchers can use this as a model for their own plans.

Blank data management plans with questions and guidance to help think through how you will take care of data during and after a project. Answering these questions will make a data management plan. Having a template that is made for the kind of research you’re doing can be helpful. There are templates for many different types of research.

Data ownership is the possession of and responsibility for the data collected or created over the course of a project. Maintaining ownership over your data will allow your community to continue making decisions about how it is used, including who it is shared with and for what purposes, and to utilize the data for the betterment of the community As data owners, you might also choose to assign responsibility for some care and maintenance activities to a data steward.

Also known as “Secondary Data Analysis.” Data reuse is when you use data that already exists to do new research. This existing data might have been collected by other people or groups, and can be data from governments, numbers, surveys, interviews, and more. (National Library of Medicine, n.d.)

Is keeping data safe. This can include making sure only the people you want can change it or making sure nobody steals it. It can also be activities like making sure the files still work over time (NIH, n.d.-b)

Data sharing means making the data available for use by others after you’ve completed the project it was collected for. Those others might include community members, academic researchers, or other individuals or groups that might not be involved in the original project, but that might have an interest in reusing the data. Some of the groups that fund research or publishers of research are asking for data sharing as a way to make research processes clear, make sure another researcher can repeat an experiment, and making sure the data is used by the most possible people. This requires people working with data to make sure they say where they got the data so everyone gets credit. (Defined by authors, inspired by NIH, n.d.-c)

Data stewardship is the collection of day-to-day activities that ensure the long-term maintenance of the data. Data stewardship, and the activities people perform as data stewards, may be different from data ownership. For example, a community may own data that is stewarded by someone or something else (like an academic institution or academic researcher within an institution). That institution or researcher has the responsibility to ensure the data’s safety, security, and accessibility. 

Taking information out of a dataset that could point to who a person is. This could be direct, like their name or phone number. It can also be indirect, where on their own, they might not reveal someone, but they do when combined with other details. For example, a postal code in a small city on its own will not identify someone. However, a postal code in a small city for someone with a rare disease can identify someone. Removing this information keeps research participants’ identities secure. (National Centre for Advancing Translational Sciences, n.d.)

"A DOI (digital object identifier) is a unique number used to permanently identify online articles, documents, and other objects -- including journal articles in electronic databases, datasets, audio/video content, ebooks, and research reports." https://www.lib.sfu.ca/find/journals-articles/what-doi

Describes a bad research method, where researchers from well-resourced schools collect data from less-resourced communities. Imagine a helicopter flying in, quickly gathering data, and then going away without talking to anyone. The research is done with no input from the people living there. (Burrough, 2023)

Refers to any kind of information collected by, with, or about Indigenous people. This can come in forms such as text, numbers, symbols, images, videos, etc. The data can be about their land, water, people or culture. (NCRIS, 2022)

Research in any area that is done by or related to First Nations, Inuit, Métis, and other Indigenous nations and people. This research can also include topics on their cultures, experiences, or knowledge from past and present. (Social Sciences and Humanities Research Council, 2021)

Refers to any form of creative products/inventions created. These products can include data, videos, music, sound, circuits, code, research, etc. They can also be protected by laws or licenses. (University Secretariat, 2018)

Information gathered by a group or researcher over a very long time. Because of this, it is valuable and at risk of being lost. Data might be stored on technology that is too old to use. People who know the data well and take care of it might retire. Researchers can’t use the data because it's not available online. For community research, an organization might already have datasets they or other researchers collected. They can make a list of what they have and what they want to share. (Defined by authors, inspired by Community for Data Integration, n.d.)

A document that lays out rules between two groups that want to have a relationship. This agreement can be binding, which keeps the two groups legally following the rules listed. The agreement can also be non-binding, which allows a group to walk away with no legal problems. A MOU is a temporary document, which is used until a final agreement is made. (University of Toronto, 2023)

Stands for Ownership, Control, Access, and Possession. The OCAP® principles outline the ways that First Nation data will be protected, used, or shared. It also asserts the control that the First Nations have over data collection and usage involving them. (OCAP, 2023)

Participatory research can take many forms, but is research done together with those affected by an issue. It may also work towards social action and change. (Vaughan & Jacquez, 2020)

A unique string of letters and numbers which can be connected to articles, data, people, and more. One you might have heard of is a is a Digital Object Identifier (DOI) which connects to data or written works. They are created to last forever. This helps make items more findable over time. (National Library of Medicine, n.d.)

Making sure data is kept in a state where it can still be opened and understood even as technology changes over time. (CODATA Working Group, 2024) This can also include deciding which data you want to keep and share with others long-term. (RCSI, 2025)

Research is a process of finding out something that is true. It can mean studies done by teams at a university or other research organizations, but community organizations also conduct research. This happens through surveys, collaborating with consultants, or looking at statistics and open government data.

The start of a legal agreement that can be changed. Helps researchers and partner groups agree on how they will work together, who will give money, who owns what they make, and how it can be used and shared. It can also include keeping data safe and insurance. It should make sure both researchers and partners feel good about the research. (Defined by authors, inspired by McMaster Industry Liaison Office, n.d.)

Used as the building blocks for research, scholarship, or creative practice. Can take the form of text, numbers, images, films, video, sound, software, code, and more. Also include, facts, measurements, and observations that researchers find patterns in. (Innovation, Science and Economic Development Canada, 2021)

A cycle of caring for data. This cycle starts from the planning stage and goes through collecting and backing up data. The final part is keeping data good and sharing the final data. (Social Sciences and Humanities Research Council, 2021)

A group whose large interest is research. This group has trained staff and/or facilities to support research activities. (Social Sciences and Humanities Research Council, 2021)

A person who is going through a set process to learn new things or confirm that something is true to expand knowledge. (University Secretariat, 2017)