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University of Washington Health Sciences Library

Data Resources in the Health Sciences

An inventory of resources to support research data needs in the health sciences field. This guide is constantly being updated; please send feedback via the Comments links.

Introduction to Clinical Data

Clinical data is a staple resource for most health and medical reseach. Clinical data is either collected during the course of ongoing patient care or as part of a formal clinical trial program. Clinical data falls into six major types:

See boxes below for examples of each major type.

For additional administrative and survey sources such as healthdata.gov, see: Statistics Sources: Health Sciences

 

For registry sources, see Data Repository Registries

Electronic Health Record

The purest type of electronic clinical data which is obtained at the point of care at a medical facility, hospital, clinic or practice. Often referred to as the electronic medical record (EMR), the EMR is generally not available to outside researchers. The data collected includes administrative and demographic information, diagnosis, treatment, prescription drugs, laboratory tests, hospitalization, patient insurance, etc.

Individual organizations such as hospitals or health systems may provide access to internal staff.  Larger collaborations, such as the NIH Collaboratory Distributed Research Network provides mediated or collaborative access to clinical data repositories by eligible researchers.  Additionally, the UW De-identified Clinical Data Repository (DCDR) and the Stanford Center for Clinical Informatics allow for initial cohort identification.

Administrative Data

Often associated with electronic health records, these are primarily hospital discharge data reported to a government agency like AHRQ.

Claims Data

Claims data describe the billable interactions (insurance claims) between insured patients and the healthcare delivery system. Claims data falls into four general categories: inpatient, outpatient, pharmacy, and enrollment. The sources of claims data can be obtained from the government (e.g., Medicare) and/or commercial health firms (e.g., United HealthCare).

Disease Registries

Disease registries are clinical information systems that track a narrow range of key data for certain chronic conditions such as Alzheimer's Disease, cancer, diabetes, heart disease, and asthma. Registries often provide critical information for managing patient conditions.

Health Surveys

In order to provide an accurate evaluation of the population health, national surveys of the most common chronic conditions are generally conducted to provide prevalence estimates. National surveys are one of the few types of data collected specifically for research purposes, thus making it more widely accessible.  

Clinical Trials Registries and Databases

Clinical Research Datasets

Clinical research data may be available through national or discipline-specific organizations.  Level of access is likely restricted but available through proper channels.

Proprietary research data may also be available through individual agreements with private companies.

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