What information we collect about you:
Researchers may collect information about you, such as your name, location (in latitude and longitude coordinates form), telephone number, birth date, or e-mail/internet protocol addresses. Your personal information may be collected by the following ways:
- Screening questionnaire to determine eligibility
- Electronic registration when enrolled into the study
- Health surveys that gather information about your asthma, asthma triggers, medical history, current and past medications, illnesses, conditions or symptoms, allergies, etc.
- Medication reminders and tracking of any changes in your medication
- Weekly or daily tasks to track medication adherence, asthma symptoms, and medical doctor visits
- When you agree to receive specific location information such as pollen count and air quality in your area
- If you decide to connect a personal health device to your iPhone (such as Nike Fuel Band, Bluetooth inhalers, etc.) and grant the app permission to read that data
How do we protect your personal information?
In order to protect your privacy, we will use a random code instead of your name on all your study data. This unique code cannot be used to directly re-identify you. Any data that identifies you (including name, birthdate, phone number, etc.) will be removed, encrypted, and stored separately by Sage Bionetworks, a 501(c)(3) nonprofit research organization. The study data that will be evaluated by researchers will be stored on Amazon Web Services servers using an account that is under the control of Mount Sinai and Sage Bionetworks, (nonprofit). Study participants who choose to be contacted by the study team during the consent process, will provide the study team access to information that can identify the participant. The study team will only use/disclose that as agreed to by the subject in their consent to participate.
We will not share your information with any advertisers or other commercial third parties. We will NOT access your personal contacts, other applications, phone use habits, text message content, personal photos, or websites visited. Data will be stored in a manner that maintains strict information technology procedures to safeguard participant information and to prevent improper access.
What choices do you have about your information?
The following app features are optional for those individuals that consent to take part in this research study:
- Location Services
- Connecting the Asthma Mobile Health app to personal health devices (Nike Fuel Band, Bluetooth inhalers, etc.)
- Survey and health assessment questions
- Providing your contact information for researchers to contact you regarding this study or other research studies
You may withdraw from the research study at any time; you may also withdraw your permission for the use and disclosure of any of your protected information. If your personal information is necessary to complete the study, the information that was previously collected will be used. You can also withdraw from the research study at any time without cancelling the Authorization to use your data.
How we use your information:
We will combine your study data including survey response and tasks measurements with those of other study participants. The combined data will be used by researchers who have obtained permission to use the Asthma Mobile Health app study data. We may also use information we collect about you to:
- Contact you during the research study to get feedback about the app
- Evaluate participant usage, how often the app is used, and the usage of app features
Results of this study could be published or presented at scientific meetings or lectures but will not include your personal information.
How and with whom we may share the information we have about you:
As part of the study, the Principal Investigator, study team and others in the Mount Sinai workforce may disclose your protected health information, including the results of the research study tests and procedures, to the following people or organizations: (It is possible that there may be changes to the list during this research study; you may request an up-to-date list at any time by contacting the Principal Investigator.)
- The United States Food and Drug Administration
- The United States Department of Health and Human Services and the Office of Human Research Protection
Your personal contact information will only be accessed by the study team if necessary and will not be shared outside the study team. Your de-identified study data, such as survey results, which does not include any identifying personal information, may be shared with other researchers who Mount Sinai has approved to receive the study data.
The research team and other authorized members of The Mount Sinai Hospital and Icahn School of Medicine at Mount Sinai (together, “Mount Sinai”) workforce may use and share your information to ensure that the research meets legal, institutional or accreditation requirements. For example, the School’s Program for the Protection of Human Subjects is responsible for overseeing research on human subjects, and may need to see your information.
How to contact us with questions or concerns:
For more information please click here to review the Mount Sinai Notice of Privacy Practices