The Feinstein Institute for Medical Research and Sage Bionetworks (“Sage Bionetworks, “we,” or “us”) are 501(c)(3) nonprofit biomedical research organizations in the United States, created to enhance how researchers approach the complexity of human biological information and the treatment of disease.
In collaboration with The Feinstein Institute for Medicine, Northwell Health and Cornell Tech, we have developed a mobile application (the “DMT App”) to facilitate our understanding of what makes people do things in the moment more than they intend in a large scale research study (the “Study”). The Study is designed to help us and our research partners understand variations in behaviors that contribute to people acting impulsively, and build tools to help people regulate their behavior to improve health. Right now the Study and the app are designed for users over 18 years of age, and are open for use to those enrolled in our study or the study of another investigator where informed consent has already been given for the time being.
In order to access the DMT App functionalities, we ask you to create an account through the DMT App. To create an account, you must provide a participant ID given to you by a researcher and your age. We will inform you of the purposes for which we are collecting, processing, using, and sharing your personal data and we will obtain your consent through a separate process, but you must affirmatively consent to participate in the Study prior to creating your account. Your informed consent will be separate from the DMT App, as will your name. The only identifying information will be your Participant ID number given to you by your researcher.
In addition to the data we collect in registration for the Study, we collect the following through the DMT App and the Study:
Data Imports. The DMT App allows you to import data to the DMT App and the Study, including data collected in connection with your performance of specified tasks while holding your iPhone, like walking and tapping or through sensors on your iPhone. You may also give permission to import certain data that you may have provided to the Apple Health app or another app separately, or that may be available through other third party applications and data available through Health app, such as weight, height, steps walked or sleep pattern. We are not responsible for the data practices of third parties from which you may elect to import data and you are advised to consult their privacy policies separately. You may choose not to import these data types and to still participate in the Study.
We use the information that we collect through the DMT App and the Study to operate, maintain, enhance and provide all features of the DMT App and the Study, to provide services and information that you request, to respond to comments and questions, and otherwise to provide support to users.
Your data will be used for improving general health, medical and fitness management and for the purposes of medical research. Your data will NOT be used for advertising or other user-based data mining purposes. We will not access the content of your personal contacts, other applications, personal photos, or text and email messages on your iPhone or Android mobile phone.
With regard to our processing of personal data for the Study, our DMT App and the necessary ancillary services aggregate user-provided and user-generated information, including personal data. Although we don’t collect your name on the App, we will separate any account information from your Study data (including survey responses, tasks measurements, and health information such as height, body weight, blood pressures, heart rates, medications and voice recordings) and combine your coded Study data (without your name) with those of other Study participants for research and analysis as described below under “How We Disclose Information.”
We will not sell, rent, lease, give away, disclose or share your contact information, and will not disclose your information that we collect through the DMT App and the Study to third parties without your consent. We may provide coded study information to third parties if you consent to us doing so, as well as in the following circumstances:
We do not track our DMT App visitors over time and across third party websites or online services to provide targeted advertising, and we do not specifically respond to Do Not Track (“DNT”) signals.
Sage Bionetworks uses appropriate physical, managerial, and technical safeguards that are designed to protect the confidentiality, integrity and security of personal data that we collect and maintain against accidental or unlawful loss, theft and misuse and unauthorized access, disclosure, alteration destruction, or any other type of unlawful processing. We cannot, however, fully guarantee the security of personal data or other information transmitted to us through the DMT App or the Study.
We take steps to ensure that your personal data is kept in de-identified format useing coded research data on the app. This information is kept in a separate database within The Feinstein Institute of Medicine. However, total anonymity cannot be guaranteed.
Subject to applicable law, you may have certain rights regarding the personal data we maintain about you. You may have the right to request access to and receive information about the personal data we maintain about you, or have your personal data rectified, blocked or deleted if it is incorrect, inaccurate or outdated. Following your request, we will accommodate your enquiry as required by applicable law.
Within the App, you are able to review and amend certain personal data we have collected through your use of the DMT App and participation in the Study.
If you wish to access, rectify, delete or block any other personal data we hold about you, you may contact us at DMT@northwell.edu. Please note that while any changes you make will be reflected in active user databases within a reasonable period of time, we may retain all information you submit for backups, archiving, prevention of fraud and abuse, analytics, satisfaction of legal obligations, or where we otherwise reasonably believe that we have a legitimate reason to do so, as permitted by applicable law.
At any time, you can elect not to grant access to the use of location data by de-activating the relevant setting within the DMT App or your mobile device.
If you would like to withdraw from the Study, you may do so within the DMT App by clicking on the “Leave study” link in your profile page. You also may contact us at DMT@northwell.edu to withdraw from the Study.
You can withdraw any consent you have provided to us for the processing of your personal data at any time and free of charge. Please note that if you withdraw from the Study, we will stop collecting new data from you, but the coded study data that you have already provided will already have been distributed and will not be able to be destroyed or deleted.
If you have questions about your rights and choices in relation to your personal data, or would like to request additional information, please contact email@example.com.