Which of the following sources of patient data is usually the primary and best source?

Introduction to Clinical Data

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, physiologic monitoring data, 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.

• Healthcare Cost & Utilization Project (H-CUP)

  HCUPnet is a free, on-line query system based on data from the Healthcare Cost and Utilization Project (HCUP). It provides access to health statistics and information on hospital inpatient and emergency department utilization. The project includes a number of datasets and sample studies listed under the information icon.
  Datasets are available for purchase.

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).

• Basic Stand Alone (BSA) Medicare Claims Public Use Files (PUFs)

  This is the Basic Stand Alone (BSA) Public Use Files (PUF) for Medicare claims. This is a claim-level file in which each record is a claim incurred by a 5% sample of Medicare beneficiaries. Claims include inpatient/outpatient care, prescription drugs, DME, SNF, hospice, etc. There are some demographic and claim-related variables provided in every PUF.

• Medicare Provider Utilization and Payment Data

  Data that summarize utilization and payments for procedures, services, and prescription drugs provided to Medicare beneficiaries by specific inpatient and outpatient hospitals, physicians, and other suppliers.

• Medicaid Data Sources

  The Medicaid Analytic eXtract data contains state-submitted data on Medicaid eligibility, service utilization and payments. The CMS-64 provides data on Medicaid and SCHIP Budget and Expenditure Systems.

• Medicaid Statistical Information System

  MSIS is the basic source of state-submitted eligibility and claims data on the Medicaid population, their characteristics, utilization, and payments and is available by clicking on the link on the left-side column.

Patient / 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.

• Global Alzheimer's Association Interactive Network (GAAIN)

  The Global Alzheimer’s Association Interactive Network (GAAIN) is a collaborative project that will provide researchers around the globe with access to a vast repository of Alzheimer’s disease research data and the sophisticated analytical tools and computational power needed to work with that data.

• National Cardiovascular Data Registry (NCDR)

  The NCDR® is the American College of Cardiology’s worldwide suite of data registries helping hospitals and private practices measure and improve the quality of cardiovascular care they provide. The NCDR encompasses six hospital-based registries and one outpatient registry. There are currently more than 2,400 hospitals and nearly 1,000 outpatient providers participating in NCDR registries.

• National Program of Cancer Registries

  CDC provides support for states and territories to maintain registries that provide high-quality data. Data collected by local cancer registries enable public health professionals to understand and address the cancer burden more effectively.

• National Trauma Data Bank

  The National Trauma Data Bank® (NTDB) is the largest aggregation of trauma registry data ever assembled. The goal of the NTDB is to inform the medical community, the public, and decision makers about a wide variety of issues that characterize the current state of care for injured persons.

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.  

• Medicare Current Beneficiary Survey

  The Medicare Current Beneficiary Survey (MCBS) is a continuous, multipurpose survey of a nationally representative sample of the Medicare population. The central goals of MCBS are to determine expenditures and sources of payment for all services used by Medicare beneficiaries.

• National Health & Nutrition Examination Survey (NHANES)

  The National Health and Nutrition Examination Survey (NHANES) is a program of studies designed to assess the health and nutritional status of adults and children in the United States. The survey is unique in that it combines interviews and physical examinations.

• National Medical Expenditure Survey

  The Medical Expenditure Panel Survey (MEPS) is a set of large-scale surveys of families and individuals, their medical providers, and employers across the United States. MEPS is the most complete source of data on the cost and use of health care and health insurance coverage.

• National Center for Health Statistics

  A rich source of health data and statistics on a variety of topics.

• CMS Data Navigator

  Center for Medicare & Medicaid Services - Research, Statistics, Data & Systems

• National Health and Aging Trends Study (NHATS)

  NHATS is a study of Medicare beneficiaries age 65 years and older. The study is being conducted by the Johns Hopkins University Bloomberg School of Public Health, with data collection by Westat, and support from the National Institute on Aging. NHATS is intended to foster research that will guide efforts to reduce disability, maximize health and independent functioning, and enhance quality of life at older ages.

Clinical Trials Registries and Databases

• ClinicalTrials.gov

  o Registry and results database hosted by the NIH.
  o Information on publicly and privately supported clinical studies from around the world.

• Cochrane Library

  o Trials database, CENTRAL, is component of Cochrane Library
  o Reports of randomized and quasi-randomized clinical trials taken from Medline, Embase, and elsewhere.

• WHO International Clinical Trials Registry Platform (ICTRP)

  o Clinical trial registration data from over 15 trial registries, including registries from the European Union, Africa, China, Japan, Brazil, and Australia.
  o Use "standard search" to look for NCT or ISRCTN numbers cited in articles.

• European Union Clinical Trials Database

  o Protocol and results information on interventional clinical trials conducted in the EU.
  o Good source of pediatric drug development trials.

• CenterWatch

  o Portal for actively recruiting pharmaceutical industry-sponsored clinical trials.

• OpenTrials (beta)

  o Goal of this project is to locate, match, and share all publicly accessible data on all trials.
  o Data sources to include trial registries, journal articles, and regulatory documents.
  o Funded by Center for Open Science

Clinical Research Datasets

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