Process for Accessing Data

Approval Processes for Access to Data

Requests to access the Wellmark data will be handled by the Center for Public Health Statistics.  Access to the request form will require use of the University of Iowa HawkID and password. The data elements and years requested, information on all members of the research team requesting access, the specific purpose of data use, any subsetting or selection of the data needed (e.g., only adults), and information on the duration of the study will be entered via this website. It will not be possible to merge the Wellmark data at the patient level with any other database, since patient identifiers are not provided. Any such attempt to merge the Wellmark Data to any other database is explicitly prohibited.  However, it is possible that some researchers may want to merge the data with broader information, such as regional information on environmental quality (e.g., air and water quality). The user can request that such additional information be loaded onto the server to facilitate this (as part of the data request form) and will need to specify the reasons for doing such.

Along with the data request, all personnel who will have access to the data will be required to sign a data use agreement, agreeing to the restrictions and reporting requirements as specified in the Wellmark-University of Iowa data use agreement and additional requirements imposed by the University of Iowa. Note that this would include all students in the class who would have direct access to the data. All users will also be required to disclose any conflict of interest on the data request form.

Upon submission of the request information, staff of the Center for Public Health Statistics will review the request for completeness, and will email the PI for further information, if necessary. When the request is complete, it will be sent electronically for approval by Wellmark. This request authorization process must be followed for any use of the Wellmark data housed in the College of Public Health's Center for Public Health Statistics. An extension of an existing approved use, any additional classroom use, or a change in direction of the research requires a new approval via this process.  Use of the data is strictly limited to the scope specifically described in the access request and expressly authorized by Wellmark within the limits of the Wellmark-UI Data Use Agreement and under the access terms defined in this agreement. Broad requests for access without sufficient focus and detail of the purpose will not be granted.

For non-classroom uses, all members of the research team that will have access to the data must be included in the request. They must have human subjects protection certification (HIPAA certification), which will be verified with the University Human Subjects Office. In addition, they must agree to all requirements for using the data as specified in the data use agreement and to the reporting rules. All project plans must be submitted to the Human Subjects Office for IRB approval. Any use of the data which requires IRB approval will require proof of such IRB approval before the data access can be granted. If the study has been deemed by the IRB to be exempt from such approval, the PI must submit the IRB documentation stating such before data access will be granted.  Requests may be submitted to CPHS simultaneously with an IRB submission.  Final approval of data use will be contingent upon IRB approval. 

For classroom use, the instructor may request individual access to the data to prepare information to be presented to the class. In these cases, only the instructor will need permission to access the data. In other settings, the instructor may want individuals in the class to have access for some specified time-not to exceed the duration of the course. In the latter case, those students will be considered part of the "research team" and all rules apply to them as well. The instructor serves as the "Principle Investigator" and takes on additional oversight responsibility in that role.

It is anticipated that research requests may span more than one year forward. The request form allows for such prospective requests, but yearly renewals will be required and will be dependent upon satisfactory compliance with the rules of use.

When the agreements have been signed, Wellmark has approved the proposal, and IRB approval has been obtained, the data requested will be made accessible via the secured server to the individuals on the research team. This requires user authentication via the HawkID and password. Access will be to a separate/private data folder for each project, wherein the work must be done. Within that folder on the server, the PI and all collaborators on that project are free to create their analytic files and project-specific datasets as they like.

A nominal maintenance fee will be charged to them for server maintenance, disk space usage, and infrastructure to support this warehouse of data. The CPHS will keep records of what data have been released into these subfolders and the dates of such. The college finance office, in cooperation with the IT staff, will be responsible for billing of the maintenance fees.

Access to the Data

Once the access approval has been granted, the staff of the Center for Public Health Statistics will extract the approved data fields from the master database and place them in a project-specific directory (file folder) on the secured server for the use of this researcher and members of his/her research team as identified in the data use request. The users on this research team will be sent instructions on how to access this directory using their HawkID after approval has been granted. Only members of that research team will have access to that directory (file folder) via permissions set up by the IT staff.

Standard software has been licensed for this server to enable the work. If the server does not have the software needed for a particular project, it will be the responsibility of that project leadership to provide such a license. Analyses of the data must be performed on the server, but technical reports, manuscripts, Power Point presentations, etc. can be created on the user’s desktop machine. The data use agreement details obligations of the researcher with respect to Wellmark's review of any presentation, publication, or other public dissemination of information derived from these data.

Termination of Access to Data

The data access agreement specifies the time frame over which the PI and collaborators will have access to the server, and thus access to the data. At the end of that time frame, the contents of the project-specific folder will be written to archival storage media and placed into secured storage by the IT staff. If desired, the user will receive a CDRom of all non-data files (e.g., files created to perform the analyses, graphics, etc.), but will not be given any files that contain subject-level data. This policy would maintain the ability to build on that project at a later date, since the archived subdirectory could be restored, but will not allow any access to data files outside the secured server.

If the PI has not yet completed the project, he/she can request an extended time frame by submitting another data use request. If granted, the project will stay in place until the end of the extended period.

After five years during which the archived data has not been needed and restored, the archived data will be destroyed permanently and cannot be recovered.