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Indiana University School of Medicine

Ruth Lilly Medical Library

Research Data Services

This guide describes the services offered by the Ruth Lilly Medical Library for the management, sharing, and preservation of research data at the IU School of Medicine.

Finding Data

For a general search across open datasets, you can search by keyword with Google Dataset Search:

 

Google Dataset Search


 

Defining the scope of the data you are interested in and how you envision using it will help determine the best data resources to explore.  High quality open access datasets exist, but they are not always easily findable and verifiable.  Curated and licensed datasets for IUSM affiliates are also available through a variety of platforms, and may require training, a formal request process, or additional fees.  Major IUSM-affiliate data resources, along with selected open access data resources, are summarized in this guide.

An ongoing data cataloging project, listing some of the resources in this guide, is located at the IU Research Data Commons.

National Demographic and Patient Data

All of Us Researcher Workbench allows data collected through the All of Us program to be accessed and analyzed in browser.

Indiana University is has an institutional membership which allows access to both the Registered and Controlled tiers of data. Each of these tiers requires specific training to be completed. Please contact RLML Data Services for more information.

To get a sense of the scope of the data available in All of Us, you can use the publicly-available Data Browser to view aggregate-level summaries.

This database contains information on patient enrollment, medical claims, pharmacy claims, inpatient confinement claims, lab results, and provider details through administrative health claims for 67 million people in all 50 U.S. states which have been statistically deidentified and and are HIPPA-compliant.

To access this data, here are the steps:

  1. Explore the kind of data that is available through the available data views and the Optum Clinformatics Data Mart User Manual
  2. Submit an IU Optum User Access Request through the linked RedCap form.
  3. Send an email to the Social Science Research Commons (SSRC) to complete the required training through a live training session or asynchronously through the associated Canvas course.
  4. Request additional IU computing accounts through University Information Technology Services (UITS). A Slate and/or Slate Project account is need in order to access the data as read-only; a Carbonate account is needed to use Research Desktop.
  5. Open an email from SSRC with instructions notifying you that permission has been granted, and access the data.  You will also be added to the IU Optum User Community on Microsoft Teams with additional documentation and user support.

Indiana University is a member of the Kentucky Research Data Center (KRDC) consortium, one of 33 Federal Statistical Research Data Centers which allows access to federal agency microdata that are not publicly available.  The basics of obtaining access to this data are as follows:

  1. Explore ResearchDataGov to get a sense of the data that is available.
  2. Come up with an idea for a project proposal, referring to the KRDC guidelines.  
  3. Discuss with the IU Advisory Board representative, Emily Meanwell (emeanwel@indiana.edu)
  4. Consult with the KRDC Administrator, Carlos Lopes (carlos.j.lopes@census.gov) to prepare the proposal for submission.

Note that travel grants for research using this data are available to IU affiliates.

 

The Healthcare Cost and Utilization Project provides access to longitudinal hospital care data through several databases that are accessible by IU affiliates through a request process which includes certification training and a request to access submission. Some databases are national, and others contain state-specific subsets.

To get oriented to HCUP data, please see their online tutorial series.

 

The Inter-University Consortium for Political and Social Research (ICPSR) is a data archive where data can be shared and accessed. To search publicly available data, see the ICPSR site.

To access controlled data that is not publicly available, you will need to access ICPSR through an IU-affiliated IP address (on-campus computer or VPN). You will also need to create a free MyData Account using your IU-affiliated email address.

Instructions for creating a MyData Account:

Indiana Electronic Medical Records

Do you have a research question involving an Indiana patient population?  The Regenstrief Institute can broker datasets containing statewide electronic medical record (EMR) information.  Submitting a data request for your research proposal begins this process.

Three major Indiana EMR resources are mediated by Regenstrief:

  • Indiana Network for Patient Care is the data repository of the Indiana Health Information Exchange. It links together longitudinal clinical data from several institutions for over 18 million patients.
  • IU Health Enterprise Data Warehouse contains clinical data organized according to IU Health data dictionaries for inpatient and outpatient encounters.
  • Eskenazi Health Data Warehouse houses data from clinical care EMRs in the Eskenazi system.  It is the Eskenazi counterpart to the IU Health Enterprise Data Warehouse.

Indiana Social Determinants of Health

The tools listed here are publicly accessible and can be used in research, assessment, and grant applications.