PRIVACY POLICY

Women's College Hospital PPD ACT Privacy Policy (Canada)

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Women's College Hospital ("WCH") is committed to providing notice about the Personal Information (defined below) collected via the PPD ACT research study mobile application ("App"). The formal name of the research study in Canada is "Postpartum Depression - Action Towards Causes and Treatment: A Genetic Research Study on Postpartum Depression" and it is organized by the PACT Consortium and sponsored by Women's College Hospital (WCH), with WCH leading the Canadian study (the "Study"). To participate in the Study you will be required to sign a consent to participate ("Informed Consent").

The App is an integral part of the Study. This "PPD ACT Privacy Policy" ("Privacy Policy") provides information about how we will collect, use, store and share Personal Information about Study participants who use the App ("you").

The App will be used in different ways for two phases of the Study:

  1. In Part One, we will use this app to ask you questions about childbirth, and mood and anxiety symptoms that happened after you gave birth. Answering these questions will help Study researchers determine if you have ever experienced postpartum depression (PPD) or postpartum psychosis (PPP).
  2. In Part Two, some women (those with a history of PPD or PPP) will be asked to give a saliva sample. You will know if you are invited to participate in this part of the study via the App. Through the App we will obtain your Informed Consent to provide, through the mail, a sample of your genetic material (DNA) so that researchers can study whether there is a link between PPD, PPP and genetics. We can get DNA from your saliva, and will use it to "scan" your DNA.

The App is available to you for free however you may incur charges in downloading the App. You will not need to provide any payment information for the use of the App.

We are not asking you to make any health decisions based on the use of the App. You should discuss health decisions directly with your healthcare provider.

How will you consent to this Privacy Policy and the Informed Consent?

The App will provide a link to this Privacy Policy. If you download or use the App, supply Personal Information or answers to questions through the App, or register for an account with us, that will be your consent to this Privacy Policy. If you agree to participate, you will agree to the study and sign the consent form directly on the app. A copy of the consent form with your digital signature will be emailed to you.

What does this Privacy Policy cover?

This Privacy Policy covers our treatment of personally identifiable information and other information that might, or might not, personally identify you and is related to the Study. For ease of reference, we will call this information "Personal Information." This Privacy Policy does not apply to other research studies or other, unrelated activities conducted at WCH or to similar studies conducted at partner universities.

The App contains links to external websites that provide resources for PPD support. This Privacy Policy does not cover, and we are not responsible for the privacy policies or practices of websites that may be accessed through these links. When following a link to another website, you should read that website's privacy policy and make sure that you agree with it.

Your use of the App will allow you to provide us with Personal Information as outlined in the Informed Consent(s) and this Privacy Policy.

The Study is designed for adult women. We do not knowingly collect or solicit Personal Information from anyone under the age of 18 and we do not wish to receive it. The Study is limited to participants who live in Canada and are 18 years old or older. In the event that we gain actual knowledge that we have collected Personal Information from a child under age 18, we will delete that information. If you are a parent or guardian and believe that we might have collected such information, please contact us using the contact information below.

What information does the App collect?

Our goal is to understand the genetic causes of postpartum depression. To do this, we need study data from thousands of women with postpartum depression:

  1. In Part One, we will use this app to ask you questions about childbirth, and mood and anxiety symptoms that happened after you gave birth. Before we do this, we must first identify if you are eligible to participate by asking your comfort with using the English language on your smart device, gender, age and whether you have given live birth. If you are eligible to participate and you sign the Informed Consent, the Study will collect (through the App) personally identifiable information about you such as name, address, and email address.
  2. In Part Two, some women (those with a history of PPD or PPP) will be asked through the App if they would like to give a saliva sample. These women will be sent a kit in the mail. If you are eligible to participate in Part Two of the study, you will be asked to complete a, second, separate consent form through the App. All of the collected samples will be stored in a biobank. We can get DNA from your saliva, and will use it to "scan" your DNA. If we do this for tens of thousands of women, we can identify the genetic differences in women who got postpartum depression.

We will only collect the data we tell you about. We will not access data on your device like your personal contacts, other applications, phone use, text messages, photos, or websites visited. Your coded data will be used for scientific research, and may be shared with other scientific researchers. We will not share information about you with anyone that could be easily used to identify you.

Together with other participants' data, your coded study data will provide a rich database for postpartum depression research. It also provides a safe way to share the data with other researchers. We will never give your personal information or study data to a commercial third party (like an advertiser).

Your participation in this study is voluntary. You may decide not to participate. You may decide to leave the study at any time. If you withdraw from the study, we will stop collecting new data.

You may withdraw your consent and discontinue participation in this study at any time directly via the App.

What else does the App collect?

The App includes two tools that automatically collect certain information beyond that which you affirmatively provide. One tool collects information about crashes (Crashlytics) and one about use of the App (iTunes Connect). These tools work on an anonymous basis, without collecting personally identifiable information. Through these tools, the App may automatically receive anonymous technical information relating to your operating system, device, features used, content viewed and downloaded, whether crashes occurred, and the dates and times of your interactions with the App. We may internally use this information to understand, customize and generally improve user experience with the App and the Study.

Push notifications

Once you provide Informed Consent in the App and enroll in the Study (if eligible), you will receive push notifications regarding the Study. "Push Notifications" are messages that are sent to your smart device within the App. You can keep the PPD ACT app on your phone for as long as you like. There will be ongoing updates to the app that will allow you to learn more about PPD. You can choose to receive or not to receive updates about the study. We will use the app and Push Notifications to contact you about:

If you do not want the study team to contact you, you can "opt out" from within this app. Simply change your settings in the "Profile" tab.

What about security for Personal Information? How long will WCH keep it?

We will keep the information collected in this study indefinitely. This is so that we can do new and more detailed analyses over time as new information comes up about the types of questions that your information.

We take our obligation to protect your privacy very seriously. All data will be encoded to protect your identity and stored on secure servers under the control of Women's College Hospital (WCH).

There are two main things we can do to protect your privacy. First, the information that you give us that identifies you will be encrypted and stored on a secure server run by professionals at WCH to prevent improper access. Second, we will use a random code (like "FXP77TP9") to identify you when we analyze the data you share with us. These steps can greatly minimize the risk of loss of privacy. However, even with these steps, we can't promise that your privacy will be perfectly secure. You need to keep this in mind when deciding about participating in this study.

There is the very small risk that someone could get access to the personal information you provide. This could cause embarrassment. We take many steps to ensure your confidentiality, including keeping your identifiable information (such as your name and contact information) separate from the other information you provide as part of the study, and by keeping all data on secure servers. Therefore, we believe that this risk is very small.

You may withdraw your consent and discontinue participation in this study at any time. Any study data you provide prior to withdrawing your consent will remain as part of the study. If you wish for us to remove the information you already provided to us as part of the study in Part One or Part Two so that we do not use it in the analyses, you must notify us in writing, via email (pact.canada@wchospital.ca).

Will WCH share any of the information it receives?

Our goal is to understand the genetic causes of postpartum depression. To do this, we need study data from thousands of women with postpartum depression. This data may be shared with other scientific researchers. So, all the data you share with us will be used to try to understand the causes of postpartum depression. We will combine your data with those from other women who participate in this study. In these analyses of your data, your study data will be identified by a random code (like "FXP77TP9") and not something that could be used to easily identify you.

Together with other participants' data, your coded study data will provide a rich database for postpartum depression research. It also provides a safe way to share the data with other researchers. We will never give your personal information or study data to a commercial third party (like an advertiser).

What Personal Information can I access?

Through the App, you may access the following information you've provided to us: name, mailing address, and email address.

When you update information, however, we may maintain a copy of the unrevised information in our records to track the data entry into the Study. The information you can view and update may change as the App undergoes further development. Please note that any information that is automatically uploaded from the App (e.g., dates App used) cannot later be changed or updated. If you have any questions about viewing or updating information you have provided to us, please contact us using the contact information below.

What choices do I have?

You may choose not to install the App. If you choose not to install the App, you cannot participate in the Study. If you join the Study, you can choose not to answer any question in the App that makes you feel uncomfortable or that you do not want to answer. You may withdraw your consent and discontinue participation in this study at any time. Any study data you provide prior to withdrawing your consent will remain as part of the study. If you wish for us to remove the information you already provided to us as part of the study in Part One or Part Two so that we do not use it in the analyses, you must notify us in writing, via email (pact.canada@wchospital.ca).

Re-contact

We would like your permission to communicate with you in the future. We will reach out to you just to make sure we know that your contact details are still correct. We will probably do this a few times per year. We will only use your email and phone number as a way to re-contact you in addition to Push notifications. If you do not want the study team to contact you, you can "opt out" from within this app. Simply change your settings in the "Profile" tab.

What limitations are these on my use of the App?

By downloading and using the App, you agree that you will not do anything to interfere with or disrupt the operation of the App, will provide only accurate and current information through the App, and will not impersonate anyone else in your use of the App.

You further agree not to transmit content that you do not have the right to transmit or that infringes the rights of any party, and you agree to use the App in compliance with all applicable laws. You understand that the App or portions of it may be subject to patent, copyright, trademark and other intellectual property protection and that the ownership of software and other intellectual property related to the App, as well the goodwill associated therewith, remains with WCH or its licensors. You agree that any improvements or other changes to the App or the Study itself are the sole property of WCH.

Effective date and changes to this privacy policy

This Privacy Policy is effective as of April 24, 2017. We may amend this Privacy Policy from time to time in our good faith discretion. New versions of this Privacy Policy are effective when they are posted to our website. Use of information we collect now is subject to the version of the Privacy Policy in effect at the time such information is used.

Questions or concerns?

If there are any questions or concerns regarding the topics addressed in this Privacy Policy, please contact the study team using the contact information below.

Contact information

Email: pact.canada@wchospital.ca

Address:

PACT Canada c/o Dr. Simone Vigod
Women's College Hospital
Research Institute
76 Grenville Street, 6th Floor
Toronto ON Canada M5S1B2