The information that you provide during your participation in this study will only be used for research purposes and will not be shared or used to contact you outside of the TILES study, except for future recruitment. For a detailed description of how your information will be used, see below.
WHAT WILL HAPPEN WITH THE INFORMATION YOU PROVIDE DURING THE STUDY?
We will keep your records for this study confidential as far as permitted by law. However, if we are required to do so by law, we will disclose confidential information about you. The University of Southern California’s Institutional Review Board (IRB) may review your records. The IRB is a research review board that is made up of professionals and community members who review and monitor research studies to protect the rights and welfare of research participants.
The members of the research team, IARPA, M.I.T. Lincoln Laboratory Testing and Evaluation (T&E) team, The MITRE Corporation, The University of Southern California’s Institutional Review Board (IRB), and other agencies within the US Government and scientific community more broadly will have access to your information. A more detailed description of each group is provided below:
- Research Team: The people who work on this study will see your records. The research team will have access to all of your study information. The research team includes members of USC/Information Sciences Institute (ISI), University of Washington, INRS-EMT/University of Quebec, and Evidation Health.
- IARPA: Intelligence Advanced Research Projects Activity: IARPA is supporting this study and will have access to all of your study information. Additionally, IARPA’s parent agency, Office of the Director of National Intelligence, will also have access to all your study information.
- M.I.T. Lincoln Laboratory Testing and Evaluation (T&E) team: As part of the testing and evaluation team for IARPA, the information collected as part of this study will be provided to the M.I.T. Lincoln Laboratory Testing and Evaluation (T&E) team. Participant names, addresses, and email addresses will not be shared. Each team will be required to agree to a Data Use Agreement (DUA) that will restrict their use of participants’ identifiable information to this program.
- The MITRE Corporation: As part of the testing and evaluation team for IARPA, the information collected as part of this study will be provided to The MITRE Corporation. Participant names, addresses, and email addresses will not be shared. Each team will be required to agree to a Data Use Agreement (DUA) that will restrict their use of participants’ identifiable information to this program.
- The University of Southern California’s Institutional Review Board (IRB): The IRB is a research review board that is made up of professionals and community members who review and monitor research studies to protect the rights and welfare of research participants.
- De-identified data may be shared with other agencies within United States Government and the scientific community more broadly for the purposes of research. These data will be de-identified and efforts will be made to limit the use and disclosure of your personal information to people who have a need to review this information. Records that contain your name, phone number, email address, or other directly identifiable information will not be shared with others without your consent.
Your information will be stored electronically. All identifiable information about you will be secured by Evidation Health in accordance with all local and state laws, regulations, and Institutional Review Board (IRB) policies regarding collection and distribution of participant information. Evidation Health will use a HIPAA compliant survey system to collect participant survey responses. This study does not deal with protected health information (PHI), meaning, information collection and processing is not governed by HIPAA. However, HIPAA compliance guarantees a higher level of security of your information. Information about you that is received from any smartphone applications will be transmitted using Transport Layer Security (TLS).
All personally identifiable information (PII) will be stored only on a single secured server in the Amazon EC2 cloud designed exclusively for this purpose. All communication with the server will be secured using TLS. Only Evidation Health’s technical team will have access to this server. Your information will be secured at rest.
De-identified information will be stored on a separate password-secured server. This information will be secured at rest. Only de-identified information will be transferred to other research team members for analysis. Survey information and other de-identified information will only be linked to PII through a unique study-generated identifier. This identifier will be generated securely and can not be reversed.
Information collected from social networks that may contain identifiable information will be anonymized post-collection by removing every named entity, including any entity recognized as first and last names. Access to online social network information will be revoked at the end of the study, or upon expiration, whichever occurs first. Information collected from your phone by the installed applications will be discontinued by disabling the server-side information collection services. Information collected from voice sensors will be processed on-device and only collective, non-identifying features will be stored as part of the information collection effort. Information collected from environmental sensors will be filtered on a list of pre-registered unique Bluetooth identifiers for the devices used in this study. This guarantees that only information about indoor locations of that device can be collected.
Presentations & Publications: We may publish the information from this study in journals or present it at meetings. If we do, we will not use your name and we will only present data in aggregate, meaning data will present combined from all participants and your information will not be identifiable.
Your information that is collected in this study must be kept for a minimum of three years after the completion of the study, however, your information may be kept indefinitely.
Future Information Use: Your information that is collected during the current study may be useful to answer additional scientific questions in the future.
- Deidentifiable Information: Your deidentified information may be stored in a public database for other researchers to use. For example, this may include, but is not limited to, your heart rate, breathing rate, and answers to surveys. Other information, such as your name and email address will not be shared.
- Identifiable Information: Your audio and GPS information are considered identifiable but may also be useful for future research. If you provide specific consent at the time consent is obtained (once you download the TILES app), your audio and GPS information will be used in the future by the current research team or placed in a public database, otherwise, your audio and GPS information will not be shared.
- Future Participation Database: Basic information about you, such as your phone number, name, previously participated studies, etc. will be compiled into a database for future recruitment. This database/spreadsheet will be electronic, password protected, and accessible to members of the research team. This database will not include your participant ID number for this study.