Introduction
This Privacy Policy explains how St. Jude Children's Research Hospital Inc. (“St. Jude”) collects, uses, and discloses information from or about you when you use the InCharge Mobile Application in connection with your participation in the Sickle Cell Disease Implementation Consortium (SCDIC) Augmenting and Sustaining Hydroxyurea Utilization study. The study is described in the informed consent form that you signed.
Consent to Use InCharge Mobile Application
By using the InCharge Mobile Application, you are consenting to the collection, use, and disclosure of your personal information in accordance with this Privacy Policy and the study informed consent form. If you do not agree with the practices described in this Privacy Policy, you may not use the InCharge Mobile Application or participate in the study.
Information You May Provide Us
We collect a variety of information that you provide directly to us when you use the InCharge Mobile Application. The InCharge Mobile Application requests the following information, as described in the study informed consent form:
- Username, which is a numeric code assigned to you by study staff
- Mobile number(s) of accountability contact(s)
- Medication name and dosage
- Self-reported medication tracking information
- Hospital location
If you choose, you may also use the InCharge Mobile Application to store your medical card information, which may include:
- Medication Allergies
- Medication(s)
- Primary Care Doctor
- Notes
- Blood Type
- Weight
- Height
Entering medical card information is not required.
If you submit any personal information relating to other people through the InCharge Mobile Application, you represent that you have the authority to do so and to permit us to use the information in accordance with this Privacy Policy and the study informed consent form
How We Share and Use Information We Collect
We do not rent, share or sell your personal information to outside marketers.
Your personal information obtained via the Mobile Application will be stored in a centralized database hosted by Google, as described in the study informed consent form, and with a third-party mobile service to deliver SMS messages to your accountability contact(s).
Specific uses of personal information include the following:
- Login – Unique numeric code used to authenticate your mobile application and to store your personal information within the InCharge Mobile Application database.
- Medical Card Information – This is for your personal use only. This information is encrypted on your local device and is only accessible when the application is authenticated using your personal login and password credentials.
- Medication Information – Medication name and dosage information is stored in InCharge Mobile Application database. This information may appear in mobile notifications on your personal device. Application notification behavior can be configured in the notification settings on your mobile device.
- Hospital Location – This information is stored in the InCharge Mobile Application database and it determines the destination website for the “Patient Portal” feature and the main phone number for the “Contact Your Doctor” feature.
- Mobile Number(s) for Accountability Contact(s) – SMS messages may be sent to your designated accountability contact(s) to indicate hospital stays or missed medications. The mobile number(s) collected for your accountability contact(s) will only be used for notifications as described in the study consent form and will only be shared with the SMS distribution service to trigger the outgoing SMS (in other words, with your text messaging system to send the texts). The accountability contact(s) you have designated within the application can opt out of the InCharge Mobile Application SMS messages at any time after the first SMS message has been delivered.
Information We Collect Through Automated Means
When you use the InCharge Mobile Application, we and our service providers (which are third party companies that work on our behalf), may use a variety of technologies, including cookies and similar tools, to automatically collect information about your app usage which does not identify you. When you use the app, we may collect your IP address, browser types, browser language, operating system, the state or country from which you accessed the app, software and hardware attributes (including device IDs) referring and exit pages and URLs, platform type, the number of clicks, files you download, domain names, landing pages, pages viewed and the order of those pages, the amount of time spent on particular pages, the date and time you used the app, and upload or post content, error logs, and other similar information. When you use the app, we automatically receive certain information about the mobile phone, tablet, or computer used to access the application or software, including device identifiers, IP address, operating system, version, Internet service provider, browser type, domain name and other similar information, whether and when you update the app, date and time of use, and how you use the app, including time spent in different portions of the application.
This information is used to improve the performance and content of the app and to personalize content and layout of our pages for individual visitors.
All activities performed on the InCharge Mobile Application will be collected and analyzed with Google Analytics for Firebase. You can learn more about Google’s practices by reviewing Google Analytics For Firebase Terms of Service. https://firebase.google.com/terms/analytics
Accountability contact SMS messages will be tracked based on the unique combination of username, destination, and timestamp. This data may be used to validate compliance requirements and may be disclosed to designated third parties associated with the study.
Links to Other Websites
The app contains links to websites that are owned or operated by others (“third-party websites”). We are not responsible for the privacy and security practices of sites not owned by St. Jude Children's Research Hospital or ALSAC. We encourage our visitors to be aware of when they leave the app and to read the privacy statement of any site that collects personally identifiable data.
Changes to this Privacy Policy
Any changes to this Privacy Policy will be posted on this site. Any changes will become effective when posted unless indicated otherwise. Your continued voluntary use of the app following any changes signifies your acceptance of our Privacy Policy as modified.
Contact Us
If you have any questions about St. Jude Children's Research Hospital, the InCharge Health Mobile Application, your account, or our privacy protections, please contact us at:
St. Jude Children’s Research Hospital
Office of Legal Services
262 Danny Thomas Place
Memphis, TN 38105-3678
(901) 595-6141
john.bailey@stjude.org
Last Updated: June 1, 2019