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Focus Areas

Health Data

HSRI works closely with a variety of federal, state and private entities to design, implement, and evaluate health data systems with the goal of providing high-quality data for both system management and research functions. This includes working with stakeholders to improve data quality, ensuring that systems make use of best practices and relevant data standards, creating and maintaining custom data warehouses that properly secure sensitive health data, and producing analytic and data products that provide value to researchers, evaluators, policy makers, program managers, advocacy organizations, and the public.

HSRI prides itself on creating health data systems that are responsive to the needs of all stakeholders: funders, data submitters, data users, and the general public. Based on this principle, our health data systems are designed so provider organizations and states can manage their information assets; to facilitate retrieval of relevant information quickly and efficiently; to insure the reliability of data submitted; to meet the needs of multiple data users related to program oversight, cost monitoring, quality assurance and program evaluation; and to quickly provide those data back to stakeholders in a user-friendly fashion. Two examples illustrate the range of HSRI's information technology expertise.

  • In 2013, HSRI was selected to build and operate a data warehouse for the Maine Health Data Organization (MHDO). As a part of this ten-year contract with the State of Maine, HSRI and its partners are building a highly secure and robust data warehouse to collect and house health care claims, encounter and eligibility data , hospital financial data and other related information. HSRI is leading the project, working closely in partnership with the National Opinion Research Center at the University of Chicago (NORC) and the Public Consulting Group (PCG). This data warehouse will provide: an ETL (Extract, Transform, Load) platform capable of handling large quantities of data; a secure web portal accessible to MHDO, data submitters and other authorized users; a web-based self-service portal that will make data available to researchers, policy makers and the public; and the capability to track quality measures, analyze cost-related issues and assess issues related to access, health disparities and adherence to best practices.
  • The California Department of Health Care Services (DHCS) contracted with the Technical Assistance Collaborative (TAC) and HSRI, to conduct a Mental Health and Substance Use System Needs Assessment and to develop a Mental Health and Substance Use Service System Plan.  The Needs Assessment was carried out to satisfy the Special Terms and Conditions required by the Centers for Medicare and Medicaid Services (CMS) as part of California’s Section 1115 Bridge to Reform waiver approval. While the project focused primarily on the Medi-Cal mental health and substance use systems, it also included analysis of data from the State’s Department of Alcohol and Drug Programs’ California Outcomes Measurement System Treatment (CalOMS Tx) database, and the Department of Mental Health’s Client and Services Information (CSI) data set. This was done to provide a full picture of the behavioral health system in California. This project demonstrates HSRI's ability to:
    • Develop complex databases integrating disparate data from multiple sources: CA Medicaid, the State Department of Alcohol and Drug Programs and the Department of Mental Health clinical information system.
    • Use these combined data to estimate prevalence rates, monitor service utilization, project service needs given assumptions about health care reform, and examine work force needs.

As the above examples demonstrate, HSRI has the technical expertise to develop complex health data systems but, equally important, we have used health data in our evaluation, service system design and performance monitoring work for over thirty-five years. This provides HSRI staff with a firm understanding of the needs of those who use data from these complex information systems. Some examples will demonstrate this experience:

  • We have worked with policy makers to design policies that respond to consumers' needs/preferences. This places us in an ideal position to assist policy makers to identify the types of information required to do this and the mechanisms to collect these data and use them to design responsive policies.
    • HSRI is currently working with the Research and Training Center on Community Living (RTC) at the University of Minnesota to define, collect and analyze data that will provide a better understanding of the Federal and State resources available to support families who have an individual with intellectual and developmental disabilities (IDD). Project objectives include: (a) reaching agreement on the data elements and data definitions that will be collected by states to inform family support policy and practice nationally, (b) compiling data annually from states consistent with our data collection plan, (c) interpreting the data and translating it into actionable information to assist policy makers and others to make informed decisions over family support policy and practices.
  • We have conducted research in the areas of service utilization, service costs and service outcomes across multiple population groups and service modalities. This provides us with in-depth information on the kinds of data researchers require and the data formats/structures that are most useful to them.
    • HSRI was the lead contractor on SAMHSA's Coordinating Center for Managed Care and Vulnerable Populations Project. This project was funded by SAMHSA to facilitate common data collection approaches and analyses across 21 managed care evaluation studies. HSRI oversaw the development of a multisite dataset and managed all aspects of data collection from documentation to ensuring timeliness of data submissions. HSRI conducted multivariate statistical analyses and qualitative data analyses documenting the nature of managed care provided by each site, outcomes associated with different models, and challenges involved in the implementation of managed care at the various sites.
  • HSRI has used health services data to construct performance monitoring/management systems in multiple service systems for various types of population groups.  We are aware of the data requirements in terms of content and format and can advise relevant parties in how to identify and organize the data to construct such systems and how to use these data to improve service systems.
    • The National Core Indicators (NCI) is collaboration between the National Association of State Directors of Developmental Disability Services (NASDDDS) and the Human Services Research Institute, with the goal of implementing a systematic approach to performance and outcome measurement. Through the collaboration, participating states pool their resources and knowledge to create performance monitoring systems, identify common performance indicators, work out comparable data collection strategies, and share results. Many of the state agencies use NCI as a key component within their quality management systems. The current set of performance indicators includes approximately 100 consumer, family, systemic, cost, and health and safety outcomes - outcomes that are important to understanding the overall health of public developmental disabilities agencies. Associated with each indicator is a source from which the data is collected. Sources of information include consumer survey (e.g., empowerment and choice issues) family surveys (e.g., satisfaction with supports), provider survey (e.g., staff turnover), and state systems data (e.g., expenditures, mortality, etc.).The consumer survey, which is the heart of NCI, has recently been revised to include enhanced information about health and wellness, employment status, and ability to self direct among people with intellectual and developmental disabilities. In addition to yearly reports, NCI has produced 5 and 10 year reports of data trends as well as Annual Reports.
  • HSRI has not only constructed information systems that merge data from multiple sources, but we have used these types of cross-system data for research, evaluation and policy making applications. As a result, we are well aware of the types of issues that have to be dealt with in terms of data comparability, cross-system reliability, and the adequacy of data documentation.
    • In 2007, HSRI and its partners, Datacorp and RMC Corp. were awarded the contract for the Data Analysis Coordination and Consolidation Center (DACCC) by SAMHSA's Center for Substance Abuse Prevention (CSAP). The DACCC was organized to provide a centralized, comprehensive and coordinated data and analytic resource (for process, capacity, outcome and trend data at all levels of analysis including individual, project, community, state and national) for accountability, program planning and policy decisions. Under this contract, HSRI provided a broad range of services to both federal staff and grantees in states and communities. We worked closely with representatives from the public sector (federal, state, and local officials) and private sector (universities and other research organizations) to develop and/or promote common standards, formats, definitions, data collection protocols, and instrument development to assure National Outcome Measures (NOMs), PART and GPRA, as well as other program specific requirements were met. The team promoted efficiency and effectiveness in data collection, analysis and reporting, thus resulting in increased accountability and availability of data for CSAP and the substance abuse prevention field.