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Linking State Medicaid and Congenital Heart Surgical Registry Data: Building Capacity to Assess Disparities in Longitudinal Outcomes and Value for Children with Congenital Heart Disease

Award Number: R01HL150044
ORGANIZATION: NATIONAL HEART, LUNG, & BLOOD INSTITUTE
OPDIV: NIH
AWARD CLASS: DISCRETIONARY
AWARD ACTIVITY TYPE: SCIENTIFIC/HEALTH RESEARCH (INCLUDES SURVEYS)
PERIOD OF PERFORMANCE START DATE: 01/05/2020
PERIOD OF PERFORMANCE END DATE: 06/30/2030

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Linking State Medicaid and Congenital Heart Surgical Registry Data: Building Capacity to Assess Disparities in Longitudinal Outcomes and Value for Children with Congenital Heart Disease - Congenital heart defects are the most common birth defects managed in the United States, affecting 1% of live births. Survivors often describe significant, chronic disease. Yet, limited longitudinal data exist. Further, income and other demographics are associated with ~20% variation in mortality, even after controlling for clinical risk and center . Yet mechanisms remain unknown. Understanding how the healthcare system contributes to differences in outcomes across populations can reveal actionable targets. In our parent R01, we created the first, population-based, congenital heart data collaborative for assessment of risk-adjusted longitudinal outcomes and healthcare utilization: The Congenital Heart Surgery Collaborative for Longitudinal Outcomes and Utilization of Resources (CHS-COLOUR). Focusing on New York (NY) State Medicaid patients, we linked patient demographics and diagnostic and surgical details from centers’ cardiac surgical registries to longitudinal outcomes and healthcare utilization from the National Death Index and NY Medicaid claims. We next linked these data to pregnant parent health claims and Census block group-level measures of neighborhood demographics / economics / rurality. We found that among children on Medicaid, certain populations were more likely to see the more experienced pediatric cardiologists and cardiac surgeons—even within the same surgical centers. Further, some of these physician differences mediated 10-20% of differences in risk-adjusted outcomes across demographics. While these data are powerful, improving outcomes requires understanding generalizability of our findings and identifying influential, modifiable healthcare system characteristics that contribute to these differences in access and outcomes. For this R01 renewal, we bring together the clinical leadership and registry data from 25 congenital heart centers across 4 states in 4 distinct regions of the country (NY, Massachusetts, Colorado, & Texas). We add quantitative and qualitative health services research and public health experts and All-Payer Claims Databases. We will use these data to accomplish the following Aims: 1) Quantify the degree to which access to greater experience / quality multidisciplinary providers explain differences in risk-adjusted, longitudinal, congenital heart outcomes; 2) quantify how much congenital heart multidisciplinary provider teams explain differences in risk-adjusted, longitudinal outcomes, leveraging innovative network analyses and causal mediation; and 3) characterize how families from different backgrounds experience interactions with congenital heart providers, provider teams, healthcare delivery systems, and health insurers, from the prenatal period through longitudinal follow-up. Achieving these Aims will: 1) establish a powerful resource for assessment of longitudinal congenital heart surgical outcomes, and healthcare utilization across states and payers; 2) identify modifiable healthcare system characteristics that mediate access and outcomes; and 3) bring together key stakeholders and multidisciplinary investigators with knowledge and power to use these data to effect change.


Issue Date FY	Funding FY	Legal Entity Name	Legal Entity Address	Legal Entity City	Legal Entity State	Legal Entity Zip Code	Legal Entity COUNTY	Legal Entity COUNTRY	Assistance Listing	Award Code	Budget Year	Action Date	Action Type	Action Amount

Issue Date FY: 2026 ( Subtotal = $0 )
2026	2025	ICAHN SCHOOL OF MEDICINE AT MOUNT SINAI	1 GUSTAVE L LEVY PL	NEW YORK	NY	10029	NEW YORK	USA	Cardiovascular Diseases Research	000	6	12/2/2025	COMPETING CONTINUATION	$0
														Subtotal = $0

Issue Date FY: 2025 ( Subtotal = $2,015,832 )
2025	2025	ICAHN SCHOOL OF MEDICINE AT MOUNT SINAI	1 GUSTAVE L LEVY PL	NEW YORK	NY	10029	NEW YORK	USA	Cardiovascular Diseases Research	001	6	9/15/2025	COMPETING CONTINUATION	$2,015,832
2025	2023	ICAHN SCHOOL OF MEDICINE AT MOUNT SINAI	1 GUSTAVE L LEVY PL	NEW YORK	NY	10029	NEW YORK	USA	Cardiovascular Diseases Research	000	5	12/23/2024	CHANGE OF GRANTEE / TRAINING INSTITUTION / AWARDING INSTITUTION	$0
														Subtotal = $2,015,832

Issue Date FY: 2024 ( Subtotal = -$2 )
2024	2023	THE TRUSTEES OF COLUMBIA UNIVERSITY IN THE CITY OF NEW YORK	630 W 168TH ST FL 4	NEW YORK	NY	10032	NEW YORK	USA	Cardiovascular Diseases Research	003	4	3/12/2024	NON-COMPETING CONTINUATION	-$333,859
2024	2023	ICAHN SCHOOL OF MEDICINE AT MOUNT SINAI	1 GUSTAVE L LEVY PL	NEW YORK	NY	10029	NEW YORK	USA	Cardiovascular Diseases Research	004	5	3/12/2024	CHANGE OF GRANTEE / TRAINING INSTITUTION / AWARDING INSTITUTION	$459,839
2024	2023	THE TRUSTEES OF COLUMBIA UNIVERSITY IN THE CITY OF NEW YORK	630 W 168TH ST FL 4	NEW YORK	NY	10032	NEW YORK	USA	Cardiovascular Diseases Research	000	4	12/22/2023	NON-COMPETING CONTINUATION	-$54,795
2024	2023	ICAHN SCHOOL OF MEDICINE AT MOUNT SINAI	1 GUSTAVE L LEVY PL	NEW YORK	NY	10029	NEW YORK	USA	Cardiovascular Diseases Research	001	5	12/23/2023	CHANGE OF GRANTEE / TRAINING INSTITUTION / AWARDING INSTITUTION	$54,793
2024	2022	THE TRUSTEES OF COLUMBIA UNIVERSITY IN THE CITY OF NEW YORK	630 W 168TH ST FL 4	NEW YORK	NY	10032	NEW YORK	USA	Cardiovascular Diseases Research	002	3	3/12/2024	NON-COMPETING CONTINUATION	-$125,980
														Subtotal = -$2

Issue Date FY: 2023 ( Subtotal = $388,654 )
2023	2023	TRUSTEES OF COLUMBIA UNIVERSITY IN THE CITY OF NEW YORK, THE	630 W 168TH ST FL 4	NEW YORK	NY	10032	NEW YORK	USA	Cardiovascular Diseases Research	001	4	3/10/2023	NON-COMPETING CONTINUATION	$38,865
2023	2023	TRUSTEES OF COLUMBIA UNIVERSITY IN THE CITY OF NEW YORK, THE	630 W 168TH ST FL 4	NEW YORK	NY	10032	NEW YORK	USA	Cardiovascular Diseases Research	000	4	1/13/2023	NON-COMPETING CONTINUATION	$349,789
														Subtotal = $388,654

Issue Date FY: 2022 ( Subtotal = $388,654 )
2022	2022	TRUSTEES OF COLUMBIA UNIVERSITY IN THE CITY OF NEW YORK, THE	630 W 168TH ST FL 4	NEW YORK	NY	10032	NEW YORK	USA	Cardiovascular Diseases Research	001	3	6/13/2022	NON-COMPETING CONTINUATION	$38,865
2022	2022	TRUSTEES OF COLUMBIA UNIVERSITY IN THE CITY OF NEW YORK, THE	630 W 168TH ST FL 4	NEW YORK	NY	10032	NEW YORK	USA	Cardiovascular Diseases Research	000	3	12/24/2021	NON-COMPETING CONTINUATION	$349,789
														Subtotal = $388,654

Issue Date FY: 2021 ( Subtotal = $388,654 )
2021	2021	TRUSTEES OF COLUMBIA UNIVERSITY IN THE CITY OF NEW YORK, THE	630 W 168TH ST FL 4	NEW YORK	NY	10032	NEW YORK	USA	Cardiovascular Diseases Research	001	2	5/24/2021	NON-COMPETING CONTINUATION	$38,865
2021	2021	TRUSTEES OF COLUMBIA UNIVERSITY IN THE CITY OF NEW YORK, THE	630 W 168TH ST FL 4	NEW YORK	NY	10032	NEW YORK	USA	Cardiovascular Diseases Research	000	2	1/8/2021	NON-COMPETING CONTINUATION	$349,789
														Subtotal = $388,654

Issue Date FY: 2020 ( Subtotal = $495,156 )
2020	2020	TRUSTEES OF COLUMBIA UNIVERSITY IN THE CITY OF NEW YORK	630 W 168TH ST FL 4	NEW YORK	NY	10032	NEW YORK	USA	Cardiovascular Diseases Research	000	1	1/2/2020	NEW	$495,156
2020	2020	TRUSTEES OF COLUMBIA UNIVERSITY IN THE CITY OF NEW YORK, THE	630 W 168TH ST FL 4	NEW YORK	NY	10032	NEW YORK	USA	Cardiovascular Diseases Research	001	1	8/26/2020	NEW	$0
														Subtotal = $495,156

Grand Total All Awards = $3,676,948

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Linking State Medicaid and Congenital Heart Surgical Registry Data: Building Capacity to Assess Disparities in Longitudinal Outcomes and Value for Children with Congenital Heart Disease

Award Number: R01HL150044

ORGANIZATION: NATIONAL HEART, LUNG, & BLOOD INSTITUTE

OPDIV: NIH

AWARD CLASS: DISCRETIONARY

AWARD ACTIVITY TYPE: SCIENTIFIC/HEALTH RESEARCH (INCLUDES SURVEYS)

PERIOD OF PERFORMANCE START DATE: 01/05/2020

PERIOD OF PERFORMANCE END DATE: 06/30/2030

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