Strengthening and Expanding the Community Health Applied Research Network (CHARN) Registry to Conduct Patient-Centered Outcomes Research (PCOR)

Expanding CHARN data registries and making data available to PCOR investigators outside of the CHARN network.
Background
Purpose & Goals
Achievements & Highlights
Resources
Related Projects
Agency
  • Health Resources & Services Administration (HRSA)
Start Date
  • 2/4/2014
Functionality
  • Standardized Collection of Standardized Clinical Data
  • Use of Clinical Data for Research

 

 

 

STATUS: Completed Project

BACKGROUND

Community Health Applied Research Network (CHARN) is a network of the Health Resources and Services Administration’s (HRSA) community health centers (CHCs) and universities. CHARN was established in 2010 to create an infrastructure for this safety-net community to carry out patient-centered outcomes research (PCOR), including observational and interventional studies among underserved populations, ultimately leading to improved patient care and outcomes. 

PROJECT PURPOSE & GOALS

The participating CHCs, representing more than 1,000,000 diverse safety-net patients, are located in nine states across the country, and all have provided standardized data to the centralized CHARN Data Warehouse (CDW). To realize the full potential of the CHARN infrastructure for information sharing and research, CHARN wanted to expand and enhance its data registries and to make its data available to non-CHARN researchers conducting PCOR.

The overall goals of the one-year initiative were to:

  • Expand and enhance its centralized CHARN data warehouse by adding new data elements and covering a longer period.

  • Build capacity for collaborative research within and among participating health centers, clinicians, and investigators in all the phases of research.

  • Create a de-identified analytic data file and codebook for researchers outside the CHARN network.

  • Develop and implement a process for researchers outside of CHARN to access CHARN data and infrastructure.

PROJECT ACHIEVEMENTS & HIGHLIGHTS

  • CHARN used the PCORTF funds to maintain the PCOR infrastructure and expand the data warehouse with new data elements and additional years of data. Specifically, the warehouse was expanded to include patient vital signs and smoking status and now captures clinical encounters for all patients and all conditions seen between 2006-2013 (formerly, the warehouse covered 2008-2010).

  • To increase the accessibility of the CHARN network to outside researchers, a de-identified analytic file and associated data codebook were developed. 

  • CHARN then established a process for investigators within and outside of the CHARN network to access the CDW through the development of a data access plan. 

  • To contribute to quality improvement in the safety net, CHARN established a Steering Committee and generated four papers and four proposals to demonstrate the utility and diversity of CHARN-supported research.

PUBLICATIONS, PRESENTATIONS, AND OTHER PUBLICALLY AVAILABLE RESOURCES

Publications:  

RELATED PROJECTS

Below is a list of ASPE-funded PCORTF projects that are related to this project

  • Maintenance and Support of the Chronic Conditions Warehouse (CCW) for Comparative Effectiveness Research (CER) - The Centers for Medicare and Medicaid CCW provides researchers with Medicare and Medicaid beneficiary claims, and assessment data. The CCW data is linked by a unique beneficiary key, permitting researchers to analyze data across the continuum of care in Medicare and Medicaid administrative data. The PCORTF project provided maintenance and support for the CCW database and analytic files as well as provided one year funding to support 15 PCOR focused research studies conducted via the CMS Virtual Research Data Center (VRDC). Approved researchers using Medicare and Medicaid data may be permitted to link clinical and other data for their research projects.

  • Expanding Data Collection for the National Program of Cancer Registries (NPCR) for Comparative Effectiveness Research (CER) - Enhanced data collection and data linkages between central cancer registries and other health related datasets can provide researchers with essential real-world and population-based data for CER. This project built upon previous funding provided to central cancer registries operated by 10 states—part of the National Program of Cancer Registries (NPCR)—to collect detailed treatment and outcomes data from electronic data sources. The PCORTF funding extended longitudinal data collection for a subset of cancer patients in these 10 states, enabling patient-level CER of cancer outcomes, and to improve the tools and timeliness of cancer reporting to the Centers for Disease Control.