Definitions

Aggregate Data -The total number of occurrences within a defined population (stratified by age, gender, or geographic area) or over a given time period. When data are aggregated, groups of observations are replaced with summary statistics based on those observations. Data can only be presented in aggregate form for the purposes of reporting or publication with cell sizes of at least six (6) or more (smaller rates of occurrence or cell sizes of five (5) or less must be suppressed).

Anonymous/Anonymized information - the information never had identifiers associated with it (eg., anonymous surveys) or the information is irrevocably stripped of direct identifiers, a code is not kept to allow future re-linkage, and risk of re-identification of individuals from remaining indirect identifiers is low or very low.

Breach or Breach of Security - any unauthorized access, collection, use, modification, disclosure, destruction, disposal, storage, or loss of information or property held by, in the custody of, or belonging to CancerCare Manitoba, and includes unauthorized access to CancerCare Manitoba premises.

Coded information - direct identifiers are removed from the information and replaced with a code or unique study number. Depending on access to the code, it may be possible to re-identify specific participants (e.g., a list is retained that links the participants' code or study number with the cancer registration number so data can linked back if necessary). If identifiable PHI has been removed & replaced with a unique code PHIA Compliancy does not apply (to the database).

Cohort - a group of individuals having a statistical factor (as disease, age or risk) in common.

Co-investigator(s) - Researcher(s) and other individuals specifically identified in the research submission and identified on the PHIA agreement as requiring access to the research data; an individual who has attended/received PHIA Orientation and has been made aware of the Personal Health Information Confidentiality Policy and the consequence of a breach.

Confidential Information - all information held by, in the custody of, or belonging to CancerCare Manitoba that is not in the public domain.

Data Capture Sheet - pre-designed form/system for the purpose of recording information that can be handled by a computer.

Data Fields - specific information required for the research database. Commonly used to refer to a column in a database or a field in a data entry form.

Data Sharing Agreement (DSA) - A legal agreement that allows for the transfer of research project-specific health information between organizations; the DSA binds the organization and the researchers to their respective responsibilities and obligations for protecting research data.

De-identified - A record in which identifying information is removed and through which a link to a particular individual cannot be established.

Demographics - The qualities (such as age, sex, and income) of a specific group of people: a group of people that has a particular set of qualities.

Direct Identifier - information that identifies a specific individual through direct means (e.g., name, social insurance number, personal health information number (PHIN)).

Identifiable information - any information created, used, or received that relates to:
  1. the past, present, or future medical condition of an individual;
  2. the provision of health care to an individual; or
  3. the past, present or future payment for the provision of health care to an individual with respect to which there is reasonable basis to believe the information can be used to identify the individual.

Information Manager: - A person or body that:
  1. processes, stores or destroys PHI for a trustee, or
  2. provides information management or information technology services to a trustee.

Non-identifiable - Data that have never been labelled with individual identifiers or from which identifiers have been permanently removed, and by no means can a specific individual be identified.

Password/password protected - A sequence of characters that allows entry into a restricted system.

Personal Health Information Act (PHIA) - Manitoba Law that regulates the collection, use, disclosure, security and destruction of "personal health information" by "trustees". It has important implications for health researchers.

Personal Health Information - Recorded information about an identifiable individual that relates to:
  1. the individual's health, or health care history, including genetic information about the individual,
  2. the provision of health care to the individual, or
  3. payment for health care provided to the individual, and includes
  4. the PHIN and any other identifying number, symbol or particular assigned to an individual, and
  5. any identifying information about the individual that is collected in the course of, and is incidental to, the provision of health care or payment for health care;

Principal Investigator/Researcher: - a person who is a student, teacher or researcher either enrolled at or employed by any of the following institutions:
  1. universities as defined in the Universities Act, R.S.B.C. 1996, c. 468,
  2. colleges, university colleges, and provincial institutes as defined under the Colleges and Institutions Act, R.S.B.C. 1996, c. 52,
  3. the open university continued under the Open Learning Agency Act, R.S.B.C. 1996, c. 409,
  4. any other institutions offering public post-secondary education services that may be described in the statutes above, and
  5. other comparable institutions in other jurisdictions worldwide.

Prospective cohort study - follows a group of similar individuals (cohorts) over time who differ with respect to certain factors under study, to determine how these factors affect rates of a certain outcome.

Record - information in any form, including written, photographed, recorded or stored on any storage medium or by any means.

Research Data - facts, observations or information on which an argument, theory or research objectives are based. Data may be raw or analyzed, experimental or observational. that does not permit individuals to be identified is considered to be data.

Program of Research - A sustained research endeavor that includes one or more projects and which is generally shaped by broad objectives. Research proposals for a program of research usually describe an area of research rather than a discrete, time limited project. RRIC will consider applications for Programs of Research (the 'Program') with the understanding that individual projects within the Program must be reviewed on a project by project basis.

Prospective cohort study - follows a group of similar individuals (cohorts) over time who differ with respect to certain factors under study, to determine how these factors affect rates of a certain outcome.

Record - information in any form, including written, photographed, recorded or stored on any storage medium or by any means.

Research Data - facts, observations or information on which an argument, theory or research objectives are based. Data may be raw or analyzed, experimental or observational. that does not permit individuals to be identified is considered to be data.

Research Project - A time-limited research endeavor with specific objectives and/or research questions.

Retrospective Chart/Record Review - evaluates patient information that is existing at the time the project is submitted to the research committees for initial review. A post-treatment assessment of services on a case-by-case or aggregate basis after the services have been performed.

Secure Network Environment: - A dedicated server/network that does not allow external access. A computing system that enforces boundaries between computer networks using secure firewall that limits the exposure of a computer from unauthorized modification, destruction, or disclosure.

Study I.D. Number - a generated number or code unique to each record to replace identifiers. Depending on access to the code, it may be possible to re-identify specific participants (e.g., a list stored separately that links the participants' code with cancer registration numbers so data can be linked back if necessary).

Summary Table - analytical results and derived information generated using the data that does not directly identify an individual. This includes but is not limited to research notes taken from the data, and aggregations of the data including maps, tables and graphs.

Variable - a characteristic of a statistical unit being observed that may assume more than one of a set of values to which a numerical measure or a category from a classification can be assigned.