Research Data Request Process

The Indigenous Wellness Research Institute (IWRI) houses data for academic and community partners. Some of these data sets are available for analysis. Access to available data sets includes a standard access approval processes and may include project specific approval processes. Please note that IWRI works with many tribal communities and agencies, and as such, in addition to IWRI access processes, tribally owned or governed data will also have tribal community/agency access processes.

This Data Use Policy Confidentiality and Documentation document is also available as a pdf.

Data Request Overview:

1. Contact the PI for initial inquiry and propose preliminary purpose for accessing the data.
2. PI will notify the IWRI data management team.
3. The IWRI data management team will send the following documents to the party requesting the data
   1. IWRI data use forms
      1. Data Analysis Plan. Requires that all persons conducting analysis on the IWRI dataset have on file a plan for each set of analyses. This plan takes the form of a one-page abstract of work proposed.
         1. Please note that prior approval also extends to all presentations at conferences, or other public settings.
      2. Human Subject Approval Process Form.
         1. Requires review by an IRB for use of identifiable data or data analysis that is outside the scope of the original aims of the study.
         2. Requires review by other entities that have rights or ownership of the data i.e., tribe, health board, agency, community publication committee. This review is required regardless of identifiable or deidentifiable data.
      3. Data Use Agreement Form
         1. This is a signed declaration of the data use and restrictions
      4. Alteration to Scales or Measurements
         1. Releases IWRI from any liability of the use of its measures.
      5. Confidentiality Agreement
         1. All person(s) accessing individual level data must sign a confidentiality agreement.
   2. Project specific data use forms (if applicable)
      1. These can include agreements with Tribal community/agency or partner data sharing agreement and publication agreement.
   3. Final or most recent stamped consent form
   4. Grant
   5. Frequencies/codebook (if available)

The following documents are available on the IWRI web site (subject to availability and PI’s approval)

1. Study abstract
2. Variable matrix

4. After you have received the project documents, fill out any applicable IWRI data use forms and project specific data use forms to describe your proposed project. Complete and sign all forms and send to IWRI Research Core in one of the following ways: (1) fax to (206) 543-1228, attn: Cynthia Pearson; (2) electronic attachment to iwridata@uw.edu, cc:ing pearsonc@uw.edu; or (3) mail to Cynthia Pearson, Box 354900, 4101 15th Ave NE, Seattle, WA 98105-6299.
5. After initial approval, you and the PI (or their designate) will shepherd the proposal through any additional approval processes i.e., tribal or agency partner, health board, community or academic IRB. The time it takes for PI approval and, if necessary, tribal or other IRB approval to be processed varies by project. A discussion with the investigator should yield a better idea of the time it will take to complete this step.
6. Once IWRI data is obtained, a paper must be under review within a year or a new request must be submitted. If a paper is not under review within the second renewal period you will forfeit your right to the use of the data.
7. Only person(s) who have received approval may access and run analysis off the dataset.

Dataset must be destroyed and removed from all computers upon request from IWRI.

Last update May 7, 2014