Wellmark Repository Overview

Principal Investigators

Access to the Project Request form will require use of the University of Iowa HawkID and password. Project information including the data elements and years requested, 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 form. A delegate may fill out the form however the PI will need to approve once in Workflow. Use of the data is strictly limited to the scope specifically described in the project request. Broad requests for access without sufficient focus and detail of purpose will not be granted.

The Center for Public Health Statistics manages requests to access the data repository. Requests will be reviewed for completeness, and if necessary the PI will be contacted if further information is required. The request is then sent for approval by Wellmark, and the PI will be contacted with the final determination.

It is not 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 data in the repository 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.

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 terms of use.

Investigators should have completed CITI and HIPAA human subjects protection training. In addition, they must agree to all requirements for using the data as specified in the terms of use and data use agreement.

Access charge: To fiscally support CPHS maintenance of the data repository on the dedicated CPHS server, the PI agrees to pay an access fee. Projects with a PI and at most one eligible user will be charged $360/year per project. Projects involving a PI and two or more eligible users will be charged $600/year per project. Uses for dissertation research will be charged $120 per year. The annual charge will be billed after project approval and prior to granting server access.

Data is provided in a Windows operating environment. SAS and R statistical software is installed for use.

Educational Use

An 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. Materials to be presented should be sent to the CPHS Director for Wellmark review prior to using in class.

In other settings an instructor may want students to have access for the duration of the course. In this case, the students are considered part of the “research team” and all terms of use shall apply to them as well. The instructor will serve as “Principle Investigator” and takes on additional oversight responsibility in that role.

Individual User Agreements and Terms of Use

All personnel (Principal Investigators and Additional Investigators) who will have access to the data are required to submit a project specific Individual User Agreement, agreeing to the Terms of Use and disclosing any potential conflict of interest. This form is in University Workflow and will require use of the University of Iowa HawkID and password. The PI is included on the routing path and will need to approve all team member agreements. Note that this includes all students in a class who have direct access to the data.

Access to the Data

Once Wellmark has approved the proposal, CPHS staff will extract the approved data fields from the master database and place them in a project-specific directory (file folder) on the secured server. Access will be to a separate/private data folder for each project, wherein the work must be done. Only members of that research team will have access to that directory (file folder) via permissions set up by CPH IT staff. 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. The server blocks any movement of files, so all analyses must be performed on that server and no data may not be moved or copied off of the server.

The PI will be sent instructions on how to login to the server and project directory. This requires user authentication via the HawkID and password. The Individual User Agreement must be completed before a team member will be granted access.

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.

As a condition of use and access to the data, Wellmark has a right of review of any presentation, publication, or other public dissemination of information derived from these data. Academic freedom is preserved, and Wellmark does not have a right of rejection. All materials for public dissemination should be sent to the CPHS Director or Deputy Director to facilitate such a review prior to their release.

Project Extensions

An extension beyond an existing approved use, any additional classroom use, or a change in direction of the research requires a new project approval.

If a project is not completed within the originally approved timeframe, the PI can request an extended time frame by submitting another data use request indicating an extension of an existing project. If granted, the project will stay in place until the end of the extended period.

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 the data. At the end of that time frame, the contents of the project-specific folder will be archived. If desired, the PI may request a copy of all non-data files, (e.g., files created to perform the analyses, or graphical output), but will not be given any files that contain subject-level data. This policy maintains the ability to build on a project at a later date, since an archived project directory can be restored if a new project approval is obtained. After five years during which an archived project has not been accessed, the archived data will be destroyed permanently and cannot be recovered.