Building Data Infrastructure for Disease-Focused Health Economics Research.
Journal
Medical care
ISSN: 1537-1948
Titre abrégé: Med Care
Pays: United States
ID NLM: 0230027
Informations de publication
Date de publication:
01 12 2023
01 12 2023
Historique:
medline:
16
11
2023
pubmed:
14
11
2023
entrez:
14
11
2023
Statut:
ppublish
Résumé
Data infrastructure for cancer research is centered on registries that are often augmented with payer or hospital discharge databases, but these linkages are limited. A recent alternative in some states is to augment registry data with All-Payer Claims Databases (APCDs). These linkages capture patient-centered economic outcomes, including those driven by insurance and influence health equity, and can serve as a prototype for health economics research. To describe and assess the utility of a linkage between the Colorado APCD and Colorado Central Cancer Registry (CCCR) data for 2012-2017. This cohort study of 91,883 insured patients evaluated the Colorado APCD-CCCR linkage on its suitability to assess demographics, area-level data, insurance, and out-of-pocket expenses 3 and 6 months after cancer diagnosis. The linkage had high validity, with over 90% of patients in the CCCR linked to the APCD, but gaps in APCD health plans limited available claims at diagnosis. We highlight the advantages of the CCCR-APCD, such as granular race and ethnicity classification, area-level data, the ability to capture supplemental plans, medical and pharmacy out-of-pocket expenses, and transitions in insurance plans. Linked data between registries and APCDs can be a cornerstone of a robust data infrastructure and spur innovations in health economics research on cost, quality, and outcomes. A larger infrastructure could comprise a network of state APCDs that maintain linkages for research and surveillance.
Sections du résumé
BACKGROUND
Data infrastructure for cancer research is centered on registries that are often augmented with payer or hospital discharge databases, but these linkages are limited. A recent alternative in some states is to augment registry data with All-Payer Claims Databases (APCDs). These linkages capture patient-centered economic outcomes, including those driven by insurance and influence health equity, and can serve as a prototype for health economics research.
OBJECTIVES
To describe and assess the utility of a linkage between the Colorado APCD and Colorado Central Cancer Registry (CCCR) data for 2012-2017.
RESEARCH DESIGN, PARTICIPANTS, AND MEASURES
This cohort study of 91,883 insured patients evaluated the Colorado APCD-CCCR linkage on its suitability to assess demographics, area-level data, insurance, and out-of-pocket expenses 3 and 6 months after cancer diagnosis.
RESULTS
The linkage had high validity, with over 90% of patients in the CCCR linked to the APCD, but gaps in APCD health plans limited available claims at diagnosis. We highlight the advantages of the CCCR-APCD, such as granular race and ethnicity classification, area-level data, the ability to capture supplemental plans, medical and pharmacy out-of-pocket expenses, and transitions in insurance plans.
CONCLUSIONS
Linked data between registries and APCDs can be a cornerstone of a robust data infrastructure and spur innovations in health economics research on cost, quality, and outcomes. A larger infrastructure could comprise a network of state APCDs that maintain linkages for research and surveillance.
Identifiants
pubmed: 37963034
doi: 10.1097/MLR.0000000000001904
pii: 00005650-202312001-00012
pmc: PMC10635336
doi:
Types de publication
Journal Article
Research Support, N.I.H., Extramural
Langues
eng
Sous-ensembles de citation
IM
Pagination
S147-S152Subventions
Organisme : NCI NIH HHS
ID : P30 CA046934
Pays : United States
Organisme : NCI NIH HHS
ID : R01 CA229551
Pays : United States
Informations de copyright
Copyright © 2023 The Author(s). Published by Wolters Kluwer Health, Inc.
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