Data Sharing
Research Collaborations
Sharing data is important to research and sharing knowledge, however, it must be done ethically and carefully, following institutional requirements, local, state, and Federal rules, and participant permissions.
Who sees the data from START?
Approved Research Staff:
Only approved personnel will have access to the data repository, including the Data Repository Guardian, Principal Investigator, and select informatics-based research staff at OHSU's Biomedical Informatics Program at OCTRI (who upload secure data from events to the secure server and maintain the database). Some research staff in Dr. Marriott's lab may be granted access to limited data sets of information for statistical analyses. Data cleanup on portions of the data will be conducted as needed by approved research staff.
How do individuals collaborate with the project?
Our study (Biomedical Workforce Development; OHSU IRB #22889) teaches the biomedical workforce to conduct research by providing opportunities for trainees and researchers to collaborate with us. For example, these individuals may conduct interviews, photovoice projects, or help to analyze data. They may also want to implement data collection events using the STEM Assessment and Reporting Tracker (START). To work with us, individuals need to be trained (e.g., by us, through CITI) and complete an Individual Investigator Agreement (IIA).
Ethics Training
BWD_RCRTrainingforVolunteers.docxCollaborators can:
Complete CITI training (Responsible Conduct of Research for All and Responsible Conduct of Research for Human Subjects) and upload your existing certificates. (Be sure to add to your CV)
For projects that are smaller in scope, you can be trained by Marriott lab staff (see materials above).
Individual Investigator Agreement (IIA)
IIA_BWD_Template.docxDownload, sign, and return here.
Please let a member of our research team know that you've submitted it.
How do we share data from START?
Data Use Requests & Agreements:
All access requests will be reviewed and processed by the Data Repository Guardian. For access to data, the requestor must submit a signed Data Use Agreement and have an approved project as determined by the Data Repository Guardian. Approved projects include research projects that have IRB approval or requests for limited data sets of de-identified community- or school-level data by evaluators, community organizers, school administrators, students, public health officials or others. As the nature of this protocol is dual purpose (education and research), we will diligently monitor requests for data usage and only permit access if the project is of merit to the community, school or other group and maintains data privacy protections to participants. The study’s Trainee Advisory Board may advise on data requests. Study staff will ensure that any information that is being released in a de-Identified manner does not include any of the 18 PHI such as names, dates, unique identifiers, etc.
Collaboration Permissions:
Due to the collaborative nature of this project, anonymous data may be requested and used by other investigators provided a signed Data Use Agreement is in place and has been approved by the Principal Investigator. Anonymous data released will be associated with an ID number that cannot be linked to any subject. To maximize protections for the anonymous research participant, the Data Use Agreement stipulates that the user must report data as “less than 5” if the number of participants in an analyzed group is less than 5.
Special Permissions:
Identified data access may be granted to researchers with IRB-approved projects if there is sufficient justification for the need for identifiable data (e.g., linkage with BUILD EXITO) though participant identification numbers will be used to link data. All requests must be submitted in writing and will be reviewed by the study team and/or Trainee Advisory Board to determine priority. Prior to any access, researchers will submit a signed Data Use Agreement.
The Data Repository Guardian will:
Ensure that data/specimens are received and released according to OHSU policy and the IRB-approved repository protocol.
Oversee execution of Data Use Agreements each time data are released.
Oversee execution of Data Submittal Agreements each time data are submitted to the repository as described in this protocol.
Ensure the security and confidentiality of stored data and information
Secure data and information distribution.
Manage access to the repository by study personnel.
Track acquisitions and release of data and information.
Oversee withdrawn data, requests, and management of data with limited use.
Chair the Trainee Advisory Board.
Data Use Agreement
Download, complete, and return here. Please let a member of our research team know that you've submitted it.
How do we submit data to START?
Individuals can submit data to START by submitting a data submittal agreement. This document is currently in development with our research team. Please contact us at start@ohsu.edu if you have any questions.
Previous: Data Privacy
Up next: Data Storage