The Adolescent Medicine Trials Network (ATN) Privacy Policy
Version 1.0
Florida State University (“FSU“) is committed to providing notice about the Personal Information (defined below) collected via the Adolescent Medicine Trials Network for HIV Prevention (“ATN“) research study mobile application (“App“). The formal name of the research network is: “The Adolescent Medicine Trials Network for HIV Prevention” (“ATN“) and it is sponsored by FSU with external funding from the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD). To participate in the Study you were required to sign an electronic consent form (“Informed Consent“).
The App is an integral part of the Study. This 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 is available to you for free. 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. A copy of the Study’s Informed Consent you sign will be sent for your records to the email address you provide during Study registration.
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, other unrelated activities conducted at FSU to similar studies conducted at partner sites.
The App contains links to external websites that provide information and resources. 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 and this Privacy Policy.
The App is designed for young and young adults ages 13-24 in the United States. We do not knowingly collect or solicit Personal Information from anyone under the age of 13 and we do not wish to receive it. The Study is limited to participants who live in the United States and are 13-24 years old. In the event that we gain actual knowledge that we have collected Personal Information from someone under age 13, 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?
The purpose of the App is to provide information about ATN research studies to potential participants and to share back research findings from ATN research studies. The purpose of the ATN is to conduct innovative and collaborative research that explores promising behavioral, microbicidal, prophylactic, therapeutic, and vaccine modalities across the HIV prevention and care continuum among adolescents and young adults ages 13 through 24. Your use of the app and the feedback you provide will help us to improve the app and make it more inclusive to the diverse needs of the entire community.
As part of your registration process in the App, you will be asked to provide your name, pronouns, mailing address, email address, and contact phone number. This Personal Information will be securely stored following HIPAA standards (see detailed description in Informed Consent form) and will only be available to ATN staff who need to contact you for ATN-related activities. This information will not be visible to other ATN participants or staff who are using the app.
While you are in the ATN, you will have access to various features within the app. Any content that you choose to share in the app will only appear with your username in the app. To protect your privacy, we encourage you to choose a unique username that is different from your real name, email address, and your social media accounts. Other participants will not see any of your identifying information or your personal health information. While you are in the app, you may have access to a discussion forum feature. If you choose to share information in the app through this feature, that content will only be visible to other participants and staff in the ATN. We strongly discourage participants from sharing personal information in the app that could reveal their identity. If you choose to share identifiable information about yourself in the app, it may result in the breach of your confidentiality to other participants. We reserve the right to remove it from the app if it violates our app guidelines.
What else does the App collect?
The App includes 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 and join the App, you will receive push notifications regarding the ATN. “Push Notifications” are messages that are sent to your smart device within the App. Push Notifications may be sent to remind you about ATN activities. You may also receive Push Notifications when we update the App or features.
The App may also send you Push Notifications throughout your participation in the ATN, as necessary. You can choose to receive or not receive notifications about the ATN and you have the option to control notification settings on your smartphone (for example, to turn off audible notification tone). Lastly, the App may send you a Push Notification to let you know about new content on the app or to invite you to participate in other optional activities related to the ATN (e.g. interview about your experience in the ATN, additional optional surveys).
What about security for Personal Information? How long will FSU keep it?
All information that is collected through the App will be encrypted through encryption methods currently used at FSU and sent to a protected data server behind FSU’s firewall.
FSU will replace the direct identifiers you provide – like your name and address – with a code to help protect your identity. FSU will encrypt the direct identifiers and store them separately. Because the remaining information is coded, researchers using this information should not be readily able to identify which information pertains to you.
Every effort will be taken to protect your identity as a participant in this study. You will not be identified by name in any report or publication by the ATN or its results. Instead, if you participate in a research study, you will be known only through a study ID number. Any data linking your first name to your study ID number will be kept on a secure server. Any data that are collected from you will be stored on a secure, confidential, and HIPAA-compliant server housed at the FSU. Deidentified data from the study will be kept indefinitely for secondary analyses. Additionally, all data will be secured using an SSL 256-bit encryption. SSL encryption is the standard for all web-based transactions.
If you join an ATN research study, any ATN-related messages that are sent to you will not disclose the fact that you are in a research study. All messages will be free of any identifying information and will not have any of your personal health information. All messages generated by the ATN are sent and stored on a HIPAA-compliant server. Messages can only be directly linked to your study (should this say app ID?) ID and first name. You too can help with security. For example, access to the App on your smart device may be protected by a biometric authentication mechanism (such as Touch ID) or a passcode. You should take these or other steps to prevent unauthorized access to your smart device by protecting and limiting access to your smart device. We strongly recommend that you always use the most updated version of the operating system for your smart device. You should review the privacy and security settings often and restrict any unnecessary access.
No matter our efforts, we cannot guarantee complete security. Unauthorized entry or use, hardware or software failure, and other factors, may compromise the security of your Personal Information.
Will FSU share any of the information it receives?
The information collected by the App will only be used for research purposes. Your name will never be used in publications or presentations when the results of ATN research studies become available.
As described above, your Personal Information will be coded. The code will be stored separately and in a protected way. The only people who will have permission to access this code will be the FSU research team. We intend that the only time your identifiable information will be shared outside of FSU is when required by law. For example, we might believe disclosure is necessary to comply with a regulatory requirement, judicial proceeding, court order, or legal process served on us, or to protect the safety, rights, or property of FSU or the public.
What Personal Information can I access?
The information collected by the App will only be used for research purposes. Your name will never be used in publications or presentations when the results of ATN research studies become available.
As described above, your Personal Information will be coded. The code will be stored separately and in a protected way. The only people who will have permission to access this code will be the FSU research team. We intend that the only time your identifiable information will be shared outside of FSU is when required by law. For example, we might believe disclosure is necessary to comply with a regulatory requirement, judicial proceeding, court order, or legal process served on us, or to protect the safety, rights, or property of FSU or the public.
Through the App, you may access the following information you’ve provided to us: name, pronouns, mailing address, email address, and contact phone number.
When you update information, however, we may maintain a copy of the unrevised information in our records to track the data entry into the ATN. 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 when and how you engage with the app. When you use the app, you can choose what content to engage with in the app. You can also withdraw from the Study at any time by emailing the ATN researchers at Westat’s ATN address. When you withdraw from an ATN research study, we will remove your Personal Information from the ATN databases, though we may not be able to remove your de-identified information from research or publications that may have already happened (e.g. de-identified interim ATN results).
When your study period ends, we will ask you to uninstall the app from your phone as part of your study close-out activities.
Re-Contact
Once the ATN is over, we may only use your Personal Information to contact you in the future if you consented to your interest in being contacted for future research studies and/or consented to be contacted with updates about ATN research findings.
What limitations are there 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 FSU its licensors. You agree that any improvements or other changes to the App or the ATN research studies themselves are the sole property of FSU.
Effective Date and Changes to this Privacy Policy
This Privacy Policy is effective as of May 17, 2023. 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 the App. 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 you have any questions or concerns regarding the topics addressed in this Privacy Policy, please send a message using the contact information below.
Contact Information
Email: TBD
Phone: TBD
Address
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Last updated 05.17.2023