This privacy policy governs your use of the software application Ned (“Application”) that was created by the Centre for Global eHealth Innovation and the University Health Network (UHN). Ned is a web-based mobile application that is also available through native mobile applications, designed to assist patients in the self-manage of their disease and access a sub-set of their laboratory results.

What information does the Application collect and how is it used?

User Provided Information

The Application obtains the information you provide when you download and register the Application.

When you register with us and use the Application, you generally provide (a) your name (first name or pseudonym), email address, age, password and other registration information; (b) information about your condition, which may include self-reported symptom information and (c) information you provide us when you contact us for technical help with the application. The research team may also use your contact information (phone or email) to share important information about the app and required updates.

Automatically Collected Information

In addition, the Application may collect certain information automatically, including, but not limited to, the type of mobile device you use, your mobile devices unique device ID, the IP address of your mobile device, your mobile operating system, the type of mobile Internet browsers you use, and information about the way you use the Application.

Does the Application collect precise real time location information of the device?

This Application does not collect precise information about the location of your mobile device.

Do third parties see and/or have access to information obtained by the Application?

Only aggregated, anonymized data is periodically transmitted to external services to help us improve the Application and our service. We will share your information with third parties only in the ways that are described in this privacy statement.

We may disclose User Provided and Automatically Collected Information:

      • as required by law, such as to comply with a subpoena, or similar legal process;
      • with our trusted services providers who work on our behalf, do not have an independent use of the information we disclose to them, and have agreed to adhere to the rules set forth in this privacy statement and the Personal Health Information Protection Act, 2004 and any subsequent amendments.

Use of your Information by your Health Care Team

Some of the information that you enter into this app will be transmitted to your clinician. Your Patient Reported Outcomes (FACT-P and EPIC-26 surveys) will be transmitted to your clinician upon completion. Your notes, recorded within the application, will not be transmitted.

What are my rights?

You can stop all collection of information by the Application easily by uninstalling the Application. You may use the standard uninstall processes as may be available as part of your mobile device or via the mobile application marketplace or network.

Data Retention Policy, Managing Your Information

We will retain User Provided data for as long as you use the Application. For the purposes of the research trial, your data will be stored for 10 years as per the Records Retention and Destruction Policy at UHN.


We are concerned about safeguarding the confidentiality of your information. We provide physical, electronic, and procedural safeguards to protect information we process and maintain. For example, we limit access to this information to authorized employees and contractors who need to know that information in order to operate, develop or improve our Application.


This Privacy Policy may be updated from time to time for any reason. We will notify you of any changes to our Privacy Policy by posting the new Privacy Policy here and informing you via the application. You are advised to consult this Privacy Policy regularly for any changes, as continued use is deemed approval of all changes.

Contact us

For more detailed information about who sees your information and about your choices contact the Privacy Office.

UHN Privacy Office:

Telephone: 416-340-4800 ext. 6937


If you have complaints about UHN’s compliance with this privacy policy or PHIPA, please contact UHN’s Privacy Office at the above contact information. Further questions and concerns can be directed to the Office of the Information and Privacy Commissioner of Ontario at:

2 Bloor Street East
Suite 1400
Toronto, ON
M4W 1A8
Phone: 1-800-387-0073