STARS App Privacy Policy

Privacy Policy

The University of Pennsylvania (“Penn”) is committed to providing notice about the Personal Information (defined below) collected via the STARS research study mobile application ("App"). The formal name of the research study is: "Supporting Transitions to Adulthood and Reducing Suicide," (the "Study") and it is sponsored by the University of Pennsylvania and with external funding from the U.S. National Institutes of Health.

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 specific STARS App Privacy Policy provides information about how we will collect, use, store and share Personal Information about Study participants who use the App ("you"). By using an App, you consent to the collection, use, and sharing of your information as described in this Privacy Policy and as outlined in the Informed Consent. To the extent anything in this Privacy Policy conflicts with the Informed Consent, the terms of the Informed Consent will control.

This Privacy Policy does not cover information that Penn collects or receives about you in other contexts, such as interactions you have as a student, employee, or customer, or participant in other Penn-affiliated research studies. For Penn’s general privacy practices, please see the general privacy policy.

The App is available to you to download for free. You will not need to provide any payment information for the use of the App.

Personal Information

“Personal Information” is information that identifies you as an individual or relates to an identifiable individual. Below are examples of the categories of Personal Information that may be collected from or about you through the App. The specific categories of information that will be collected about you as part of the Study will be described in the Informed Consent.

Contact information such as name, email address, phone number, and mailing address.
Demographic information such as age, gender, sexual orientation, race, and ethnicity.
Medical history and information such as current and prior health symptoms (e.g. symptoms used in the evaluation of depression and anxiety), health habits (e.g. alcohol use), and measures of well-being (e.g. feelings of confidence). This information may be collected through in-app forms or other health surveys that you may be asked to complete.
Adverse event information, such as concern, adverse event, or other reportable matter arising in the Study.
Information you choose to provide, such as information you post in the App’s user forum.
Other information, if any, is described in the Informed Consent.

Your Contact Information will be separated from the rest of the data collected from you through the App and as part of the Study and replaced with a random code (referred to as “Coded Study Data” in this policy).

Collection of Personal Information

We and our third-party service providers collect Personal Information in a variety of ways, including:

Through the App. We collect information through the App, for example when you register a user account or use App features.
Offline. We collect information from you offline, such as when you attend Study office visits, correspond with the Study Team outside of the App, or complete other Study procedures.

Use of Personal Information

Your personal information may be used for purposes described in the Informed Consent, including:

To enroll you in the Study, including determining your eligibility for participation in the Study
To conduct and support the Study
To contact you with surveys or other messages related to the Study through in-app notifications, email, or otherwise

Your Coded Study Data may be used for purposes described in the Informed Consent, including:

To conduct and support the Study
To develop health-related treatments and improvement activities
For other research studies, if permitted in the Informed Consent
To issue research findings and related reports, which will not identify you

Disclosure of Personal Information

The Study Team may share your information with third parties, including:

Third-party service providers, such as companies that have been hired to perform Study-related services such information technology, email delivery, and other services.
Government and Regulatory authorities, such as the Institutional Review Board of the University of Pennsylvania, the National Institute of Health, and the U.S. Department of Health and Human Services.
Other Approved Study Researchers. If permitted by the Informed Consent, certain third-party researchers who are approved may access limited Study Data. The categories of approved study researchers, the type of Study Data they may have access to, and the purposes that they may use the data for will be described in the Informed Consent.By using the Services, you may elect to disclose Personal Information, such as through filling out app forms or posting messages to the App forum or message board.

Access to Personal Information

In addition to the Study Team, other parties may have limited access to Personal Information, including:

The App development company: One Cow Standing

Any information you choose to disclose on the STARS App participant forum will be viewable by other enrolled study participants who access the App.

Other Uses and Disclosures

We also use and disclose your Personal Information as necessary or appropriate, especially when we have a legal obligation or legitimate interest to do so:
To comply with applicable law and regulations.
To cooperate with public and government authorities.
- To respond to a request or to provide information that we, in our sole discretion, believe is important or is necessary to protect our interests.
To cooperate with law enforcement.
- For example, when we respond to law enforcement requests and orders or provide information that we, in our sole discretion, believe is important.
For other legal reasons.
- To enforce any terms and conditions; and
- To protect our rights, privacy, safety or property, and/or that of our affiliates, you or others.

Other Information

The App will collect Other Information related to its performance, including but not limited to:

Device information
App usage data
IP Address
Aggregated or de-identified data

Collection of Other Information

The App includes tools that automatically collect certain information beyond that which you affirmatively provide. Apple and Google collect app crash data through their app store platforms. 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.

Access to Other Information

In addition to the Study Team, other third parities may have access to Other Information, including:

Apple/Android Analytics will have access to information collected through the respective app stores, such as app crash data.
The App development company: One Cow Standing

Uses and Disclosures of Other Information

Other Information may be used for purposes including:

To identify, evaluate, and provide technical support related to App errors.
Other Information may be used for research purposes, such as quantifying App usage

Security

We seek to use reasonable organizational, technical, and administrative measures to protect Personal Information. This includes storing your information in systems with limited access which are housed in facilities using physical security measures. More information about specific security measures can be found in the Study Informed Consent. Unfortunately, no data transmission or storage system can be guaranteed to be 100% secure. If you have reason to believe that your interaction with us is no longer secure, please immediately notify us at: STARSstudy@nursing.upenn.edu

Choices and Access

We give you certain choices regarding our use of your Personal Information for Study communications. You may opt-out of receiving certain notifications from us. You may turn SMS (text) messages on or off in the Settings screen of the STARS app. Alternatively, you may reply “STOP” to any study-related SMS to be unsubscribed from all future SMSs. You may turn push notifications on or off in your phone’s notification settings. You may update your phone number and email address in the Settings screen of the STARS app. We will try to comply with your request(s) as soon as reasonably practicable. Please note that if you opt-out of receiving app notifications from us, we may still contact you about important Study-related updates, from which you cannot opt out.

Retention Period

Your participation in this Study is voluntary. You may decide not to participate or you may leave the Study at any time. If you decide to withdraw, we may not delete the information that we have already collected and we may continue to use it. However, we will stop receiving any new Study Data about you and will stop contacting you about the Study except in the case of serious, actionable medical need. The specific retention policies and the steps you need to take to withdraw will be described in the Informed Consent for the Study.

Third-Party Services

This Privacy Policy does not address, and we are not responsible for, the privacy, information or other practices of any third parties, including any third party operating any website or service to which the App links. The inclusion of a link on the App does not imply endorsement of the linked site or service by us or by our affiliates. In addition, we are not responsible for the information collection, use, disclosure or security policies or practices of other organizations, such as Facebook, Apple, Google, Microsoft, RIM or any other app developer, app provider, social media platform provider, operating system provider, wireless service provider or device manufacturer, including with respect to any Personal Information you disclose to other organizations through or in connection with the App.

Third-Party Advertising

The Study will not use nor make your information available for Third Party Advertising.

Minors

This Study and App are not intended for individuals under the age of 18. We do not knowingly collect Personal Information from minors under the age of 18, nor are minors under the age of 18 recruited by the STARS App study. If we learn that we have collected the Personal Information of an individual under 18, we will take steps to delete the information as soon as is possible.

Contacting Us

If you have any questions or concerns regarding the topics addressed in this Privacy Policy, please send an email message.