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Building Data Capacity for Patient-Centered Outcomes Research Interim Report 3 - A Comprehensive Ecosystem for PCOR (2022) / Chapter Skim
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3 State-Level Data and Collaborations
Pages 33-42

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From page 33...
... Blewett said that large federal data projects using electronic health records (EHRs) and linked data are critical to patient out comes research, but the time lags in the availability of these data make the results less actionable for state health policy.
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From page 34...
... Another example discussed by Blewett was a voluntary local health system collaboration, the Minnesota EHR consortium COVID-19 project. There are 11 health systems that are voluntarily participating in this consortium to provide public health surveillance data in close to real time for decision makers.
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From page 35...
... Participants include AcademyHealth's State-University Partnership Learning Network and the Medicaid Medical Director Network. This distributed data network allows states to retain their own data and analytic capacity while being able to compare their outcomes data to those from other states.
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From page 36...
... She added that SHADAC collaborates with federal partners to obtain state-level data from the National Health Interview Survey, but it is a "heavy lift." Among the challenges, she listed the need to have analysts who know how to interact with the National Center for Health Statistics and have special sworn status (from the Census Bureau) , and the need for a new proposal every year.
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From page 37...
... First, state-level data are useful for understanding health disparities, because lower-income individu als and families, including those with a significant disability, are underrepre sented in many national and commercial datasets, while Medicaid data can provide comprehensive coverage on diverse populations. Second, state-level data can be challenging to work with and to acquire.
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From page 38...
... He also noted that Medicaid provides integrated services for people with complex needs, such as high-risk children and youth; adults eligible for Medicare and Medicaid, including those with long-term care needs; and people with complex physical health, behavioral health, and social service needs. Gilmer also highlighted experimentation with alternative delivery strategies, such as the use of community health workers to build health literacy and peer providers with lived experience to increase engagement in health care.
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From page 39...
... Inpatient Sample; the Kids' Inpatient ­Database; the Nationwide Ambulatory Surgery Database; the Nationwide Emergency Department Database; and the Nationwide Readmissions Da tabase. AHRQ also creates three statewide databases, available for some states that allow the distribution of the data: the State Inpatient Databases; the State Ambulatory Surgery Databases; and the State Emergency Depart ment Databases.
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From page 40...
... Examples include linking to birth or death certificates, state-level surveys, patient-reported outcomes, and social determinants of health data collections. Steiner noted that AHRQ is currently actively exploring links to social determinants of health data as well as physician practice variables for Medical Expenditure Panel survey and HCUP data.
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From page 41...
... Challenges associated with access, ranging from how the data are stored to the processes involved in accessing them, make the use of state-generated data for research at the national level particularly difficult. The lack of standardization and lag times in data availability present additional challenges.
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Key Terms

  • state health
  • data access
  • distributed data
  • state level
  • medicaid data

  • state medicaid
  • data network
  • health data
  • data capacity
  • claims data

  • building data
  • data elements
  • data collaboratives
  • data quality
  • targeted data

  • medicaid medical
  • health interview
  • behavioral health
  • health disparities
  • medicaid agencies

  • medicaid datasets
  • adult medicaid
  • comprehensive coverage
  • social determinants
  • avoids concerns

  • network model
  • zip codes
  • ambulatory surgery
  • county level
  • emergency department


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