Research Privacy Policy

The Institute for Work & Health (IWH) regards the access to personal information for research purposes as an important privilege. Protecting the privacy of individuals whose personal information is used in our research and the confidentiality of personal information in our custody is an integral commitment of IWH.

We meet this research commitment by:

  • establishing clear principles and policies for the protection of personal information, emphasizing high standards of organizational, technical and physical security practices and protocols;
  • communicating privacy protection policies and practices to IWH staff, affiliates and stakeholders;
  • restricting access to personal information to those members of the organization who have authorized access for research purposes;
  • submitting research protocols involving personal information to external research ethics boards;
  • designating the position of IWH Privacy Officer to oversee the Institute's privacy protection polices and practices;
  • ensuring all staff are trained in the principles and practices of personal information protection and requiring all staff to annually commit, in writing, to respect the Institute's principles, policies and practices in the protection of personal information; and
  • ensuring that the Institute's policies and practices are consistent with the best national and international standards of privacy protection in health research and legislative requirements.

Privacy, confidentiality and data security handbook

The Institute has developed a handbook that includes information on IWH's research ethics principles and a description of the current legislative framework governing personal information in Ontario. It also includes a summary of the ten privacy protection principles which shape current information privacy practices. 

In addition, the handbook contains specific information on the Institute's privacy protection policies and procedures, including research ethics review practices. It also details the IWH's committment to describing the privacy impacts of our research and our policies and practices concerning organizational, physical and technical security.

The handbook is intended to help all IWH-affiliated persons become acquainted with IWH privacy policies and practices as they relate to the use of personal information for research purposes. A public version of the Privacy, Confidentiality and Data Security Handbook is available by clicking on the link below. In this version, some sections have been abbreviated, and the appendices have not been included for security reasons.

Use of secondary data and record linkage

Secondary or administrative data sources can be very useful resources for research. These data sources are collected by organizations to conduct their business. For example, the Workplace Safety & Insurance Board collects information in the course of administering employee compensation claims and collecting employer insurance premiums. These types of data generally provide savings in cost and time and reductions in respondent burden as compared to direct surveying or interviewing. Often, these data sources cover entire populations.

Contemporary standards for ethical research practice expect that researchers obtain informed consent from people who are invited to participate in research. It is often not feasible to obtain individual consent from people whose information is recorded in administrative records. To address this special circumstance, enhanced standards for using secondary data sources without individual consent are being developed through the initiative called Harmonizing Research & Privacy, funded by the Canadian Institutes of Health Research.

The Institute for Work & Health is committed to respecting these standards and the guidance outlined in the CIHR document Best Practices for Protecting Privacy in Health Research (September 2005). To that end, whenever we plan to conduct a study using secondary data and/or record linkage without individual consent, we submit our study protocol for ethical review to a Research Ethics Board at a recognized organization. This submission includes assessments of the benefits of conducting the research, the risks involved, whether other methods could be used and the safeguards in place to protect the data and the confidentiality of the study subjects.

The following is a list of research projects being conducted at the Institute for Work & Health which are using or will use secondary data without individual consent. Projects from 2005 onward are listed. Click on any of the following to view a summary.

Who to contact

For more information about privacy and confidentiality policies and procedures at the Institute, or to express any concerns about the Institute's handling of private or confidential information, please contact:

Dr. Monique Gignac
Associate Scientific Director & IWH Privacy Officer