Privacy Policy

Effective date: Pending

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.

We respect your privacy. This privacy policy describes our collection of personal data when you participate in the Study available at digitalmarshmallow.org, or otherwise use the DMT App, our use and disclosure of such personal data, and the steps we take to protect such personal data. “Personal data” means any information relating to an identified or identifiable natural person directly or indirectly.

Your use of the DMT App and your participation in the study are each voluntary. By using the DMT App or participating in the Study, you consent to the privacy practices described in this privacy policy. The entity responsible for the collection and processing of your personal data in the context of the Study and the DMT App is The Feinstein Institute for Medical Research at 350 Community Drive, Manhasset, NY 11030, United States and Sage Bionetworks at 1100 Fairview Avenue North, Seattle, WA 98109, United States. Its representative in Europe is the foundation Sage Bionetworks EU, 271b Noorderakerweg, 1069LT Amsterdam, Netherlands.

Registering for the Study through Feinstein/Sage Bionetworks

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.

Information We Collect

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.

  • Health Surveys. With your permission, we collect and process some personal data that is necessary for the purpose of the study. To better understand your evolving health, we will ask you to answer questions about yourself (e.g., body height, weight, gender, and age, behaviors such as drinking, eating, and exercising), your medical history, and your current health, race or ethnicity. You may choose to leave any questions that you do not wish to answer blank.
  • Standard Log Information. We automatically collect standard server log information, such as internet protocol address and details of how you used the DMT App (e.g., history of page requests such as uploading data or signing in and date/time of request).
  • Location data. You may elect to turn on the location services on the DMT App and grant the app access to your GPS coordinates. With your permission, we use that location data to determine the overall distances you travelled so that we better understand your level of activity and evolving health, but we do not share your actual location.
  • Other Information You Provide to Us. We also receive other information, including personal data that you may provide to us, such as comments or questions you provide to us.

How We Use Information

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 use standard log files and other automatically-collected usage data that is essential for the Study and the DMT App to function effectively, including to: (i) personalize the DMT App and the Study, such as by remembering information so that it does not need to be re-entered, (ii) monitor and analyze the DMT App and the Study, (iii) monitor aggregated DMT App usage metrics, and (iv) track your activities on the DMT App and in the Study. We do not use cookies, beacons or device fingerprinting.

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:

  • To the extent permitted by applicable law, we may disclose your information if required to do so by law to comply with state and federal laws, in response to a court order, judicial or other government subpoena or warrant, or to otherwise cooperate with law enforcement or other governmental agencies.
  • We also reserve the right to disclose your information that we believe, in good faith, is appropriate or necessary to (i) take precautions against liability, (ii) protect ourselves or others from fraudulent, abusive, or unlawful uses or activity, (iii) investigate and defend ourselves against any third-party claims or allegations, (iv) protect the security or integrity of the DMT App and the Study and any facilities or equipment used to make the DMT App or Study available, or (v) protect our property or other legal rights (including, but not limited to, enforcement of our agreements), or the rights, property or safety of others. We will notify you of any such disclosures.
  • Information about our users may be disclosed and otherwise transferred to an acquirer, successor, or assignee as part of any merger, acquisition, debt financing, sale of assets, or similar transaction, or in the event of an insolvency, bankruptcy, or receivership in which information is transferred to one or more third parties as one of our business assets, to the extent and in the way as prescribed by applicable law.
  • As described above in the “How We Use Information” section, we will combine your Study data, including survey response and tasks measurements, with those of other Study participants. The combined data will be transferred to Synapse, a computational research platform, for analysis. Researchers from the Study team and its partners accessing data through Synapse will analyze the data and report findings back through blog or scientific publications. This Study gives you the option to share your coded Study data more broadly, with other researchers worldwide, for use in this research and beyond to benefit future scientific research. If you choose to share your data broadly, your coded data (without your contact information) will be added to a shared Study dataset on Synapse. Your data will be made available to qualified researchers who are registered Synapse users and who agree to use the data in an ethical manner, to do no harm, and not attempt to re-identify or re-contact you unless you have chosen to allow them to do so. For more information about our data practices in the context of the Synapse research platform, see the Synapse Privacy Policy.

How is My Health App Data Handled?

You have the option to share data from your mobile device’s iOS or Android Health app with the App. Please note, unless you agree to share your data through and with the App, we will not be able to include it in the study. Once you agree to share your data through and with the App, such data becomes covered by this Privacy Policy. We are not responsible for the data practices of the iOS or Android Health app outside the DMT App in any way.

Do Not Track

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.

Data Security

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.

Your Rights and Choices

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 privacypolicy@sagebase.org.

Changes to Our Privacy Policy

We may change this privacy policy from time to time. Any changes will be posted on this page with an updated revision date. In the event that any changes to this privacy policy materially alter your rights or obligations under this privacy policy, we will make reasonable efforts to notify you of the change. For example, we may send a message to your email address, if we have one on file, or generate a pop-up or similar notification when you access the DMT App or the Study for the first time after such material changes are made. Your continued use of the DMT App or the Study after the revised privacy policy has become effective indicates that you have read, understood and agreed to the then-current version of this privacy policy.

Contact

If you have any questions, comments or requests regarding this privacy policy or our processing of your information, please contact: DMT@northwell.edu.