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Data Request Frequently Asked Questions

How do you classify data (i.e., aggregate vs. record-level)?

Our data are classified according to the following schema:

Identifiable Record-Level Data: Data that include elements that directly identify an individual. By definition, identifiable record-level data contain personal health information (PHI).

De-identified Record-Level Data: Data that include elements that may constitute identifying information because there may be reasonably foreseeable circumstances in which the data could be used, alone or with other information, to identify an individual (e.g., if linked with publicly available data). Thus, de-identified record-level data may contain PHI.

Aggregate Data: Summed and/or categorized data that are analyzed and placed in a format that precludes further analysis (for example, in tables or graphs) to prevent the chance of revealing an individual’s identity (individual records cannot be reconstructed). Aggregate data do not include PHI.

Published Data: Data made available to the public. Published data do not include PHI.

How do I know what data sets and data elements are available?

Our Data Book summarizes the data elements available in commonly requested data sets, including: 

  • Activity Level Reporting
  • Wait Times Information System
  • New Drug Funding Program 
  • ePath (cancer pathology data)
  • Brachytherapy
  • Symptom Management
  • Ontario Renal Reporting System

If you have questions about other datasets, such as the Ontario Cancer Registry, Canadian Institute for Health Information’s Discharge Abstract Database or National Ambulatory Care Reporting System, please email the Data Disclosure Team.

Who oversees the data disclosure process?

The Data Disclosure Working Group and the Data Disclosure Subcommittee form the governance structure that reviews and approves all research data disclosures. Before being approved by the subcommittee, all research data requests undergo an extensive review by the working group. The group comprises our research, privacy and data subject matter experts. The subcommittee also oversees the policies and procedures associated with data disclosure.

Is Research Ethics Board (REB) approval required for all research requests?

Yes. The disclosure of record-level data for the purposes of a research project requires the prior approval of a Research Ethics Board. In addition, we require that the approving board comply with the requirements set out in Ontario’s Personal Health Information Protection Act (PHIPA) and its regulations. As part of the Research Data Request Intake Form, please provide a copy of the Research Ethics Board approval letter.

The Personal Health Information Protection Act, 2004 is an Ontario law that governs the collection, use and disclosure of personal health information (PHI) within the health sector. The objective is to keep PHI confidential and secure, while allowing for the effective delivery of healthcare. Under this legislation, persons and organizations that provide healthcare are collectively known as health information custodians.

What are the Information and Privacy Commissioner Fact Sheets and how do I access them?

We use the Information and Privacy Commissioner Fact Sheets to guide the security and protection of our identifiable record-level data. The following are the relevant fact sheets for research data disclosure in Ontario: 

  • Fact Sheet #16: Health-Care Requirement for Strong Encryption, July 2010 
  • Fact Sheet #12: Encrypting Personal Health Information on Mobile Devices, May 2007 
  • Fact Sheet #14: Wireless Communication Technologies: Safeguarding Privacy & Security
  • Fact Sheet #10: Secure Destruction of Personal Information, December 2005
  • Best Practices for the Secure Destruction of Personal Health Information, October 2009 

All fact sheets can be found at the Information and Privacy Commissioner of Ontario website.

What are the conditions of using data requested through the health system planning data request process?

When you receive health system planning data from us, you will receive a release letter that sets out the terms and conditions for using the data.

This letter will cover how you may use the data, how long you may retain the data, and information about disclosure of the data.

What is the administrative fee and why did it increase in January 2021?

The administrative flat fee accounts for the staff time required for an initial feasibility assessment by data analysts, research associates, privacy specialists and managers. It also covers the time required for final review by the Data Disclosure Subcommittee.

Despite rising operating costs, we haven’t increased our administrative fee since we set the original fee schedule more than 5 years ago. The number of research disclosure requests has increased since then, and so has their complexity. That means we need greater staff support to continue to provide value. The fee increase will help cover these additional costs.

The 1-time administrative fee increased on January 4, 2021 from $2100 to $3000 per request. The increased fee applies to the following types of requests:

  • New research data requests submitted on or after January 4, 2021
  • A change to a request previously approved or disclosed by us before September 2015

Are there any exceptions to this increase?

You will be exempt from the new administrative fee if you have recently submitted a grant application using an estimate received from CCO based on the previous fee schedule.