Privacy Policy – Connect1d

Connect1d Canada Consent and Privacy Policy: Researcher

Welcome to Connect1d Canada, a digital diabetes registry operated by the Centre for Global eHealth Innovation, University Health Network (UHN).

This Consent and Privacy Policy governs your use of the software application Connect1d Canada (“Application”) that was created by the Centre for Global eHealth Innovation, part of University Health Network (UHN). The Centre for Global eHealth Innovation is a digital health research and development group that is hosted at UHN.

Connect1d Canada is a web application designed to facilitate recruitment of people living with type 1 diabetes (T1D) into research studies being performed in Canada, and through that, establish a national registry of those Canadian individuals living with T1D.

Connect1d Canada presents people living with T1D (“Participants”) with Canadian, academic, research opportunities, like clinical trials or research surveys, in patient-friendly language. Based on their answers to various questionnaires presented to Participants through the Application, Connect1d Canada helps them better understand which study opportunities they might be eligible for, in a safe and secure manner.

Connect1d Canada is allowing the principal investigator (“Researcher) of a Research Ethics Board (“REB”) approved type 1 diabetes research study (“Study”) access to the Application to post the Study solely for the purposes of recruiting potentially eligible study participant(s) into that Study and for no other purpose.

We hope the Application will make participation in clinical research across Canada more accessible to a large array of Participant(s), and help accelerate recruitment into relevant research studies. UHN is making this Application available to you, the Researcher, solely for purposes of connecting self identified eligible T1D Participants to relevant research studies based on information provided by each of you, the Researcher and the Participant. This Application is not a medical device, and the Participant is not necessarily under the care of UHN as a health institution. UHN does not independently verify information of Participants provided through the Application.

Our Commitment to Privacy

This Consent and Privacy Policy gives you information on how Connect1d Canada collects, manages, and protects your data as well as the data of the Participant, including any Personal Information and Personal Health Information shared within the Application. It further describes which specific data may be shared with you the Researcher, as well as what data will not be shared, and how the Participant and you the Researcher, are intended to control and manage this sharing and the further use of this Personal Information and Personal Health Information.

When you choose to create an account with Connect1d Canada at connect1d.ca, you will need to agree to this Consent and Privacy Policy as well as to the Terms and Conditions (which is presented separately). By agreeing to the Consent and Privacy Policy and the Terms and Conditions, you are providing consent for your Personal Information to be stored and used by Connect1d Canada as presented below. You are also further agreeing to use the information provided to you by the Participant, solely as outlined herein, consistent with the consent of the Participant.

Data Collection & Usage

Creating an Account

If you decide to create an account with Connect1d Canada, you will be required to provide your full name and email address. Without this information, the Application will not be able to create an account for you.

Connect1d Canada collects and uses Personal Information (PI) that you provide to us while creating an account on the Application. Examples of PI that we collect may include, your name, contact information (such as e-mail address), confirmation of your research role, and affiliated institutions. Together, such information is referred to as “Personal Information” within this policy.

Study Information

Within Connect1d Canada, you are only able to post REB approved Stud(ies) for which you, the Researcher, are the principal investigator. You are able to add your study by providing information about your Research Ethics Board (REB) approved study, such as study name, description, recruitment target, compensation, location, and approval letter.

Once you submit your study, it will be reviewed by the Application Team for completeness and appropriateness. Upon your study being approved, it will automatically be posted and made available on the platform, and users will be able to view the study information you have provided.

Recruitment Activities and Use of Participant Data

If and when a user indicates that they may be eligible for and are interested in your posted Study, you will be granted rights to see their Full Name and Email Address on the Application. By accepting this policy, you are agreeing to use this information ONLY for the purposes of recruiting the user for the specific Study that they indicated interest in, and for no other purpose (including any other studies posted on the Application, or any other purpose outside of the platform).

When your study has completed recruitment, your study will close and you will no longer be able to view the list of interested users.

The Applicant has ONLY consented to the use of their Full Name, Email Address, and any other information disclosed by the matching of the Participant to the Study for purposes of the specific Study for which they have indicated their interest. Any further use of the information by the Researcher, or member of the Researcher study team, including use, storing, or sharing of the Applicant’s information for any other purpose beyond the specific Study, except as otherwise consented in writing by the Applicant, will result in the Researcher, and the Research Institute from which Researcher belongs being banned from future use of this Application.

Automatically Collected Information

Connect1d Canada collects certain information from you automatically, which is limited to analytics on the Application screens you use. This automatically collected data will only be used by the Application Team within UHN that is responsible for maintaining the Application, and for hosting the data submitted to the Application. It may also include third party agents of UHN, acting solely on UHN’s behalf, and will only be used for system administration purposes, with access to such data limited to diagnosing problems with servers (for software bugs), if any; to monitor traffic patterns; to determine which services are used most frequently; to assess site usage and, to help to improve the usability of Connect1d Canada.

By creating an account with Connect1d Canada, you are agreeing to the automatic collection of the data listed above, solely for use by the Application Team and third party agents acting solely on UHN’s behalf.

In addition to the use of the Automatically Collected Data described above, the Application Team may also use information provided by you, around the nature of the Study to develop further Questionnaires for T1D Participants and for purposes of improving the quality of the Application.

Connect1d Canada may use “cookies” for the convenience of users and to enhance your experience using Connect1d Canada. A cookie is a small text file that is recorded either temporarily or persistently on your computer by a web page server and is not intended to deliver viruses or other harmful programs to your computer.

One function of a cookie is to enable Connect1d Canada to recognize a user without requiring the user to repeatedly log in when using Connect1d Canada. By using cookies, Connect1d Canada is able to deliver a more efficient service that is more personalized for each user.

Web browsers generally accept cookies automatically. On Connect1d Canada, when you sign-in, you can:

opt for the Application to remember you and then it will use cookies to do so

If you prefer, you may choose to set your browser to decline cookies

you may be able to modify your browser setting to notify you each time a cookie is created and permit you to accept or decline cookies on an individual basis or to accept cookies from web sites that meet certain disclosure and use specifications.

Note that some functionality of Connect1d Canada may be limited if you direct your browser to reject all cookies.

We Might Share Your Data

With Other Users

Your research study will be available to be viewed by all users of the Application. You also agree that Connect1d Canada may share your PI and research study information with users. Patient users who are interested in a research study can view study details and information about the research team members (name, academic credentials, research role, and contact information) that you have posted. In the case a patient is interested to participate in a study, they can complete the study’s eligibility questionnaire. If eligible, the research team will be notified through Connect1d Canada and can contact the patient through email.

With Third Parties

Connect1d Canada is a registry that aims to better capture and bring awareness to the state of T1D in Canada and the extent of research into T1D. To achieve this, Connect1d Canada may also share, from time to time, aggregate statistics, such as the number of registered Participants, their aggregate characteristics (for example, the average age of registered users), and their well-being, for example, as well as the number of participating Researchers, their affiliated research institutions, and the types of research studies registered through the Application, with the public through reports, publications, and presentations and for purposes of marketing the Application and its utility. You will not be identified in any publication or presentation that may come up from the use of the data. This will be done under the provision of UHN, and under the directive of the Principal Investigator.

We will not sell, rent, or share your PI with third parties other than as outlined herein.

We may disclose your personal health information as required by law, such as to comply with a subpoena, or similar legal process.

How You Can Control Your Data

You will have control over your PI. If at any point you want to change or delete the information that has been collected, you can contact the Connect1d Canada support team by email at help@connect1d.ca

Participation

Participation in Connect1d Canada is voluntary. If you decide at any point that you no longer want to participate in Connect1d Canada and you no longer wish to include Stud(ies) within the Application, you may opt-out of future participation by deleting your Connect1d Canada account.

How We Store Your Data

Connect1d Canada may retain your PI for as long as you use the Application. If you decide to discontinue your participation in Connect1d Canada, we will continue to handle your PI in accordance with this Privacy Policy. Should you decide to delete your Connect1d Canada account and the associated data, the stored data on the application will be deleted. However, please note that any data already shared with third parties, has been de-identified for analysis purposes, or used in a research study, or for other purposes will not be retrievable by the Application Team.

How We Keep Your Data Secure

Connect1d Canada has implemented security measures intended to protect your PI both online and offline, including measures intended to restrict unauthorized persons from accessing PI. Encryption technologies are used when transferring and receiving data provided through Connect1d Canada. We also have security measures in place at our physical facilities to protect against the loss, misuse, or alteration of PI stored at Connect1d Canada. We also have restricted access to the servers to the Application Team, and have the ability to audit who accesses your data and when. Although we have implemented various measures to protect your information, Connect1d Canada does not and cannot guarantee the absolute security of any information.

Unauthorized Use of Participant Information

Researcher(s) using this Application are being granted rights to Participant PHI solely to contact Participant for the specific Study for which Participant has provided consent. Researchers are only allowed to use this information to contact Participant for the specific Study unless specific written consent for further contact is obtained when formally consenting Participant for the specific Study. We have a zero tolerance policy for misuse of Participant PHI by Researcher or any member of the Research study team. Upon learning of any misuse by the Researcher of Participant PHI, we will no longer allow the Researcher or their affiliated institution further access to the Application.

Modifications and Updates to the Privacy Policy

This Consent and Privacy Policy may be updated from time to time for any reason. We will notify you of any changes to our Consent and Privacy Policy by posting the updated version here and informing you via Connect1d Canada’s website. We are also, by virtue of your registration with the Application, confirming your permission to notify you through email, that you provide to us when registering, of any changes to, or requests to update or expand your consent as outlined in this document. Please also check this Consent and Privacy Policy regularly for any changes.

Applicable Law

This Consent and Privacy Policy governs your use of the Application. This policy was created by the Centre for Global eHealth Innovation, UHN in compliance requirements of Ontario’s privacy legislation, the Personal Health Information Protection Act (PHIPA). Without regard to conflicts of law principles, and exclusive jurisdiction and venue for any dispute arising out of this Privacy Policy, shall be the Provincial courts of Ontario or Federal courts of Canada.

Contact Us

For information, questions, or complaints, please write to:

University Health Network
Centre for Global eHealth Innovation
Toronto General Hospital
Fraser Elliot Building, 4^th Floor
200 Elizabeth Street
Toronto, ON, M5G 2C4
Telephone: 416-340-4800 x4765
Email: help@connect1d.ca

For more detailed information about who sees your information and about your choices, contact the UHN Privacy Office:

Telephone: 416-340-4800 ext. 6937
Email: privacy@uhn.on.ca

Complaints

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
Website: www.ipc.on.ca

LAST UPDATED on August 3, 2021

Connect1d Canada Consent and Privacy Policy: T1D Participant

Welcome to Connect1d Canada, a digital diabetes registry operated by the Centre for Global eHealth Innovation, University Health Network (UHN).

Connect1d Canada provides you, a person living with T1D (“Participant”) research opportunities, like clinical trials or research surveys, that have been preselected, and communicated in patient-friendly language. Based on your confidential answers to various questionnaires presented through the Application, Connect1d Canada helps you understand which study opportunities you might be eligible for, in a safe and secure manner.

We hope the Application will make participation in clinical research across Canada more accessible. UHN allows the leading investigator of a research ethics board approved research study relevant to T1D (“Researcher”) to post information about research study (“Study”) to the Application. Connect1d Canada is not a medical device, and neither the Application or UHN intends to provide any clinical care through this Application nor to in any way influence your decision to participate in any posted Study.

Our Commitment to Privacy

This Consent and Privacy Policy gives you information on how Connect1d Canada collects, manages, and protects your data, including any Personal Health Information, which you share within the Application. It further describes which specific data may be shared with others, as well as what data will not be shared, and how you are able to control and manage this sharing.

When you choose to create an account with Connect1d Canada at connect1d.ca, you will need to agree to this Consent and Privacy Policy (which is presented separately). By agreeing to the Consent and Privacy Policy and Terms and Conditions, you are providing consent for your Personal Health Information to be stored and used by Connect1d Canada as presented below.

Data Collection & Usage

Creating an Account

Once you have an account, you will be able to see research opportunities on the Application. However, to be able to see whether or not you meet the studies eligibility requirements, you would have to complete the Registration questionnaire. This questionnaire is voluntary, but without it, you will not be able to see if you are eligible or reach out to research terms to let them know you are interested in participating.

Determining Eligibility

As a Connect1d Canada user, you will be asked to voluntarily complete Questionnaires providing the Application with your Personal Health Information. Connect1d Canada has two types of questionnaires:

1) Registration Questionnaire: This questionnaire obtains basic details about you and your disease status for the registry, and is used to determine your eligibility for study opportunities.

2) Eligibility Questionnaires: As you engage with the Application, you may find studies that cannot fully determine your eligibility, and may need to know more about you. The Application may ask you to fill out multiple Eligibility Questionnaires over your time using the Application, and you are consenting to having such Eligibility Questionnaires presented to you by the Application. Each time you are presented with an Eligibility Questionnaire, you will be asked to confirm that your answers can be used as outlined in this Consent and Privacy Policy. Each time you are presented with an Eligibility questionnaire, your decision to answer any question remains optional, and you will always be provided the option of refusing to answer any or all of the questions. This will however mean that you may not be able to interact with studies since they require your answers to determine eligibility.

The Application and the internal logic within the Application, uses your answers to the Questionnaires which may contain your PHI, and eligibility criteria submitted by the researcher(s)to the Application, to identify research opportunities that you may be eligible for.

The information you provide Connect1d Canada is considered Personal Health Information. This includes your name, contact information (such as postal code and email address), birth date, gender, ethnicity, T1D related and other health information (HbA1c values, hypoglycemia events, secondary complications, other disorders), and other personally identifiable information. Together such information is referred to as “Personal Health Information” (or “PHI”) within this Privacy Policy.

Interacting with Research Studies

In the event that you are interested in learning more about the research opportunities that you may be eligible for, as a Connect1d Canada user, you have the ability to notify the research team of a study that you may be eligible for, that you are interested in participating in their study.

When you select “I am interested in participating” in the Application, the research team responsible for that specific study will receive a notification that you are interested as well as your Full Name and Contact Information, so they may contact you directly outside of the Application. Because each research studies will post their eligibility requirements, when you indicate your interest in participating in the research, the researcher(s) will understand that you believe you meet the eligibility requirements. Nevertheless, none of your answers are released to the researcher(s).

Once you provide your contact details through the Application for a specific research opportunity, the relevant research team will then engage with you directly, to determine your eligibility for the study, to provide you more details of the study, and ultimately to obtain from you your decision as to whether you wish to participate in the research. Your indicating that you are interested in participating via the Application does not create any obligation to proceed with the research. Participation in the research remains completely voluntary.

Automatically Collected Information

Connect1d Canada collects certain information from you automatically, which is limited to analytics around the Application screens you use. This automatically collected data will only be used by the Application Team within UHN responsible for maintaining the Application, and for hosting the data submitted to the Application. It may also include third party agents of UHN, acting solely on UHN’s behalf, and will only be used for system administration purposes, with access to such data limited to diagnosing problems with servers (such as software bugs), if any; to monitor traffic patterns; to determine which services are used most frequently; to assess site usage and to help to improve the usability of Connect1d Canada.

By creating an account with Connect1d Canada you are agreeing to the automatic collection of the data listed above, solely for use by the Application Team and third party agents acting solely on UHN’s behalf.

In addition to the use of the Automatically Collected Data described above, the Application Team may also use information provided by you in response to Questionnaires that has been stripped of all directly identifying information (such as your name, email address and other information which directly identifies you) for purposes of improving the quality of the Application.

Web browsers generally accept cookies automatically. On Connect1d Canada, when you sign-in, you can:

opt for the Application to remember you and then it will use cookies to do so

If you prefer, you may chose to set your browser to decline cookies

you may be able to modify your browser setting to notify you each time a cookie is created and permit you to accept or decline cookies on an individual basis or to accept cookies from web sites that meet certain disclosure and use specifications.

Note that some functionality of Connect1d Canada may be limited if you direct your browser to reject all cookies.

How We Share Your Data

With Other Users

Only with your explicit consent, through you selecting “I am interested in participating” on a specific research study (“Study”) within the Application, will Connect1d Canada share your Full Name, and Contact Information (email) with a registered researcher, and their research administration team, with primarily responsibility for the Study (“Researcher”). The Researcher(s) who can register a study within the Application must be affiliated with a research organization within Canada, and can only register a research ethics board approved Study.

With Third Parties

Connect1d Canada is a registry that aims to better capture and bring awareness to the state of T1D in Canada. To achieve this, Connect1d Canada may also share, from time to time, aggregate statistics, such as the number of registered users, their characteristics (for example, the average age of registered users), and their well-being, for example, with the public through reports, publications, and presentations and for purposes of marketing the Application and its utility. You will not be identified in any publication or presentation that may come up from the use of the data. This will be done under the provision of UHN, and under the directive of the Principal Investigator.

We will not sell, rent, or share your PHI with third parties other than as outlined herein.

We may disclose your personal health information as required by law, such as to comply with a subpoena, or similar legal process.

How You Can Control Your Data

You will have control over your PHI. If at any point you want to change or delete the information that has been collected, you can contact the Connect1d Canada support team by email at help@connect1d.ca

Participation

Participation in Connect1d Canada is voluntary. If you decide at any point that you no longer want to participate in Connect1d Canada, you may opt-out of future participation by deleting your Connect1d Canada account.

Account Creation for Others

Connect1d Canada does not knowingly or specifically collect PHI from users under the age of 18. If you know someone living with T1D and you want to find research studies that they could participate in, you can browse the featured studies that will be made available on the public website but should not be using the Application on behalf of another person. In the future, Connect1d Canada will support a new account type for caregivers or guardians of people under the age of 18 and living with type 1 diabetes.

Please note that posting inaccurate account creations or Eligibility Questionnaire answers can result in the deletion of your Connect1d Canada account and your future participation.

How We Store Your Data

Connect1d Canada may retain your PHI for as long as you use the Application. If you decide to discontinue your participation in Connect1d Canada, we will continue to handle your PHI in accordance with this Privacy Policy. Should you decide to delete your Connect1d Canada account and the associated data, the stored data on the application will be deleted. However, please note that any data already shared with third parties, has been de-identified for analysis purposes, or used in a research study, or for other purposes will not be retrievable by the Application team.

How We Keep Your Data Secure

Connect1d Canada has implemented security measures intended to protect your PHI both online and offline, including measures intended to restrict unauthorized persons from accessing PHI. Encryption technologies are used when transferring and receiving data provided through Connect1d Canada. We also have security measures in place at our physical facilities to protect against the loss, misuse, or alteration of PHI stored at Connect1d Canada. We also have restricted access to the servers to the Application Team, and have the ability to audit who accesses your data and when. Although we have implemented various measures to protect your information, Connect1d Canada does not and cannot guarantee the absolute security of any information.

Theft, Loss or Unauthorized Access of your Information

In the event that UHN becomes aware that your PHI submitted through Connect1d Canada has been stolen or lost, a person has obtained unauthorized access to it, or someone has used, disclosed or disposed of in in a manner other than as described in this policy, UHN will investigate the incident and notify you if a breach has occurred. If you become aware of any unauthorized use of your PHI submitted through this Application, please immediately notify UHN Privacy Office at the address below.

Modifications and Updates to the Privacy Policy

Applicable Law

Contact Us

For information, questions, or complaints, please write to:

University Health Network
Centre for Global eHealth Innovation
Toronto General Hospital,
R. Fraser Elliot Building, 4^th Floor
200 Elizabeth Street
Toronto, ON, M5G 2C4
Telephone: 416-340-4800 x4765
Email: help@connect1d.ca

For more detailed information about who sees your information and about your choices, contact the UHN Privacy Office:

Telephone: 416-340-4800 ext. 6937
Email: privacy@uhn.on.ca

Complaints

2 Bloor Street East
Suite 1400
Toronto, ON
M4W 1A8

Phone: 1-800-387-0073
Website: www.ipc.on.ca

LAST UPDATED on August 3, 2021