Who is responsible for this program?
Your privacy is important to us. The I’m Ready program (the research study) is completed by REACH Nexus. We are funded by the Canadian Institutes of Health Research and REACH Nexus is part of MAP Centre for Urban Health Solutions at St. Michael’s Hospital, Unity Health Toronto.
The I’m Ready research program is not a government testing initiative, and there are no government or healthcare organizations that are tracking your participation. We will be sharing aggregate and anonymous data to show how access to HIV testing and connections to care can be better understood and improved.
We limit what we collect and use
As you will see below, you will be given a unique participant ID, which allows our research team to know that the information we collect through this research all comes from the same person. Our study team will not attempt to re-identify you. We will make efforts to ensure that the research data is accurate and will be securely archived by our research team for 7 years after the end of the study, which is usual research practice. This research is bound by our ethics certificate and approval by Unity Health Toronto.
How we collect, use, store and protect your information in this program
The I’m Ready, Test app (mandatory)
The I’m Ready, Test app is owned by Unity Health Toronto and will be used to generate a unique participant ID that will be used in all study activities to keep you as anonymous as possible (see options below) and to facilitate the steps involved in this research, including submitting your test results from the HIV self-test kit. When you download the app, you will be asked for your year of birth and province. You will also be asked to create a PIN (personal identification number) to keep the app secure on your phone.
This app uses push notifications to remind you to order and use your kit, to connect with a peer and to complete research surveys. You may disable push notifications through the app in your device settings, but note that keeping your notifications on will help you to get the most out of this research study. We will also be able to collect data anonymously to better understand and support other people using HIV self-testing.
Ordering a kit
If you need to order a kit(s), you can choose to have it delivered to your home or to be picked up at a pickup location of your choice. The information related to ordering your kit is not kept in the app, but is securely collected by Unity Health (see “ordering your test kit” below). To use the kit, you will have to use your I’m Ready, Test app to scan the QR code on the package. This will let our study team know that the kit has been used.
The surveys you’ll complete in the app are provided by Qualtrics, a survey service. This means that we share your unique participant ID with Qualtrics so that our research team can identify your answers when they download the survey responses from Qualtrics. While Qualtrics’ own data handling practices will apply to the surveys, Qualtrics will not be able to identify you. Your survey data is removed from Qualtrics by our research team at the end of the study.
If you choose to connect to a peer navigator through the I’m Ready, Talk secure telehealth service, the I’m Ready, Test app will send your unique participant ID to the I’m Ready, Talk app (see below for more details).
The I’m Ready, Test app uses Google Analytics to help us identify how people use our app so that we can continue to improve it over time. Google Analytics may track IP addresses, but does not give our research team access to any information that can identify you.
All information in the app (including your year of birth, province, unique participant ID, kit serial number, and test result) will stay in the app on your device until you delete the app from your device. The information in the app will also be kept securely in “the cloud” (on web servers) for use by our researchers until the end of the research study.
Ordering and getting your test kit
When you order a kit through the I’m Ready, Test App, you will be redirected to a web-based order form. Your unique participant ID will automatically be sent to the order form, which is at Unity Health Toronto, separate from other research data.
You can choose to have the kit(s) delivered to your home or to another address of your choosing. If you choose to have the kit(s) mailed to you, the information (recipient name and address) you provide on the delivery form will be securely transferred from Unity Health Toronto to our distributor and will only be used for mailing the kit(s) to you. This information will only be kept by Unity Health Toronto for the duration of the study, but may be kept longer by the distributor for the purposes of administrative record keeping. You can choose to use your legal name or a made-up name on the delivery form. The kit(s) will be mailed from the distributor via Canada Post.
The study team has no control over delivery times or possible interruptions to mail services. You should also be aware that there is a chance (however small) that the package may be lost or delivered to the wrong address. We estimate that your kit(s) should arrive within 1-2 weeks of being ordered, however we can’t guarantee this. If you don’t get your kit(s) within 3 weeks of ordering, please reach out to a member of our study team.
If you choose to pick up a kit(s) at a pickup location, the order form will create a pickup code for you to use at the location. A staff at the pickup location will only need to see your code to give you your kit and will not need to know or record your identity. This pickup code will be sent to the app and viewable in the “my pickup codes” section of the app menu.
The I’m Ready, Talk app (optional)
At any time throughout this study you can choose to get peer support. This is provided through the secure I’m Ready, Talk service, which is a version of OnCall’s telehealth platform that Unity Health Toronto is licensed to use for this study.
To use I’m Ready, Talk,you will be asked for a name and a functioning email address. You can choose to use your legal name or you can make one up. This information is only used to book appointments, share appointment information with you and connect you with our peer navigators. In addition to audio or video appointments, you can send messages securely through the chat in I’m Ready, Talk.
If you have downloaded I’m Ready, Talk as a mobile app onto your device instead of accessing it through a web browser, any information in the app will stay in the app until you delete the app from your device.
Your peer navigator may make notes during your appointment in the I’m Ready, Talk platform. These notes will be protected but will not appear to you. Notes are general and used only to help the peer remember what you’ve talked about to support your ongoing conversations even if you connect with a different peer navigator later on.
Messages and peer navigation notes are not shared with our research team and will be deleted from OnCall’s secure system every 8 months. OnCall will also delete all data in their system at the end of this research study. OnCall does shares basic information with our research team through your use of the app, such as frequency, type, and length of appointments. This information will help our research team to improve services in the future.
In the event that you mention causing harm to yourself or others, the peer navigators will use your information to do what they can to ensure that you or others receive help and are safe.
As noted above, by giving your email to I’m Ready, Talk you may receive emails that identify you as a user of the app. Anyone who sees these emails could know that you are a participant in this HIV research because emails are not secure in the way a phone call or regular mail would be. Copies of an email may continue to exist, even after efforts to delete the email have been made. Please note: you must not use email for medical emergencies. If you require immediate help, call your clinic or care provider or seek emergency services.
This website at readytoknow.ca
The I’m Ready to Know website and the information it collects is securely stored. Unity Health Toronto only collects and uses the information that you choose to provide to us through our contact form and newsletter subscription box. This website uses Google Analytics to help Unity Health Toronto understand how people are using our website so that we can continue to improve it over time. Google also tracks IP addresses for its own uses.
Readytoknow.ca stands alone and does not have any integrations with other apps or products that are part of the I’m Ready research program, aside from regular links embedded in its webpages.
Your rights to research data
The research consent form has all of the details about how this research is managed and how the information described above is used for our research. If you have already downloaded the I’m Ready, Test app you may have already read the research consent form.
In this research study, you will have access to some of your research data. As long as you keep the I’m Ready, Test and I’m Ready, Talk apps on your device you will have access to your test results, chat history with peers, and all other information you put into each app.
Our researchers will have access to other research data (as described above) that is linked to your unique participant ID. You are free to stop your participation in this research at any time. Our researchers have the right to keep all of the information that you submitted or that was generated in the apps and services associated with this research program until the time that you stop your participation. Our researchers will use and hold on to the research data to do the research as approved.
Questions or concerns