Glossary
Anonymized data is data that has been unlinked from identifiers (for example, data could describe details about someone with cancer without naming that person).
A biopsy is when some tissue is taken from the body, usually from a tumour, and then examined in a laboratory to help confirm if you have a disease, and the extent of a disease.
Consent: In the context of data, consent is giving someone permission to use the data they have collected from you for a specific purpose. No one can use your personal data without getting consent from you. Consent is permission.
Data is information. Health data is also known as Personal health information (PHI). PHI is “identifying information” about an individual’s health or health care history. This can include quite a lot of information, such as information about your health condition(s), treatment, health care number, drugs that you may be taking, and so much more.
Data Custodian: A technical entity responsible for the secure collection and/or storage of data and making initial decisions on data use, disclosure, retention, and disposal. Primarily concerned with security and privacy of information. (source: GA4GH)
Data Steward: An entity responsible for assuring the quality, integrity, and access arrangements of data and metadata in a manner that is consistent with applicable law, institutional policy, and individual permissions. (Source: GA4GH)
Electronic Medical Record: An electronic record of a person’s interactions with the healthcare system. EMRs are secure, and bring together all the information about a patient so that the view is comprehensive.
An electronic signature, or e-signature is a legal online replacement for a handwritten signature.
Genes are the basic building blocks of your DNA. Genes carry information that decides what you will look like, and what colour your eyes will be, among many other things.
Health data is also known as Personal Health Information (PHI). PHI is “identifying information” about an individual’s health or health care history. This can include quite a lot of information, such as information about your health condition(s), treatment, health care number, drugs that you may be taking, and so much more.
Identifiers are pieces of information (data) that help identify a person (for example, one’s name and birth date).
An integrated dataset is a set of data from different sources – it brings together different pieces of data from different people. Datasets are sets of data.
Mutations are changes in the DNA sequence of cells. They can be helpful, harmful, or neutral (no effect).
Online patient portal: An online patient portal is a place where patients can go to see the information that has been collected about them within a healthcare institution.
Personal health information (PHI) is “identifying information” about an individual’s health or health care history. This can include quite a lot of information, such as information about your health condition(s), treatment, health care number, drugs that you may be taking, and so much more. Privacy laws in Canada define and aim to protect PHI (Ref: https://www.gov.nl.ca/hcs/files/phia-phia-faqs-feb-2011.pdf).
Population Health Research studies the health of an entire population (rather than just one person), to try to improve the health of that whole population. When you study population health, you are also interested in learning what factors might cause poor health (or good health).
A registry is a database that holds information about a certain disease.
Secondary Use of Data: When data is collected, it is collected for a specific purpose. If the person, group, or organization who collected the data takes the data (in this case, personal health information) it has collected for one reason, and uses it for a different reason, that is called secondary use.
A Shortcut in the context of an app, is a faster way to get to a section within an app.