Data Storage

Safely storing the data collected through START in order to protect participants is a top priority for the START team, meeting or exceeding institutional requirements as well as local, state, and Federal rules.

START uses a data repository

  • Information collected through START activities (surveys or substudies) will be store indefinitely in a data bank, also called a repository.

  • Data stored within this repository may be used and/or shared in future research with the University or other researchers.

How do we store data from START?

Study Identifiers:

Upon enrollment, subjects will be assigned a code that will be used instead of their name, medical record number or other personally identifying information. Electronic files for data analysis will contain only the subject code. Codes will not contain any part of the 18 HIPAA identifiers (initials, DOB, MRN).

Limited Access:

The key associating the codes and the subjects personally identifying information will be restricted to the PI and study staff. The key will be kept secure on a restricted OHSU network drive a in a limited access folder.

Secure Server:

START survey data will be maintained on a secure server housed in OHSU’s biomedical informatics core facility. Oregon Clinical & Translational Institute (OCTRI) will be responsible for server security and backing up data in a secure manner. This department is very familiar with security and confidentiality procedures as their servers store personal health information for the OHSU hospital as well as other research studies. Due to the anonymous nature of study components and identifiable data being not sensitive in nature, a Certificate of Confidentiality will not be obtained. Data are stored in a relational repository using study identifiers. Identifiable information is kept private and away from de-identified data sources.

Password Protected:

Portfolio items, informational interviews, photovoice data, field notes, and focus group information will be transferred from Qualtrics/REDCap and saved to a password-protected secure folder on OHSU’s X drive and/or Box. Survey data, qualitative transcripts, photovoice project data, and portfolio materials will be saved indefinitely.

Electronic data will be stored:

• On restricted drives on the OHSU network.

• On a web-accessible REDCap database (housed on an OHSU secure server).

• On the cloud file storage solution provided by Microsoft OneDrive.

• In a custom database housed on an OHSU secure server (managed and overseen by OCTRI biomedical informatics program).