Can linking databases answer questions about paediatric heart failure?

Pasquali, Sara K.; Schumacher, K.; Davies, Ryan R.

doi:10.1017/s1047951115000967

Cited by 9 publications

(46 citation statements)

References 39 publications

(68 reference statements)

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“…The past several years have been characterized by what has been termed an era of “big data” 1–3 . During this time, the volume, velocity, and variety of data captured across numerous sources have increased exponentially, outpacing traditional techniques for managing and analyzing data.…”

Section: The Era Of Big Datamentioning

confidence: 99%

“…During this time, the volume, velocity, and variety of data captured across numerous sources have increased exponentially, outpacing traditional techniques for managing and analyzing data. Newer data platforms, computing capabilities, and analytic techniques have been developed to better manage, integrate, analyze, and provide more “real-time” feedback to various industries regarding their data, with the goal of optimizing performance and outcomes 1–3 . For example, the automotive industry is capturing data generated by sensors on electric cars to better understand driving habits such as typical acceleration and braking patterns.…”

Section: The Era Of Big Datamentioning

confidence: 99%

“…For example, the automotive industry is capturing data generated by sensors on electric cars to better understand driving habits such as typical acceleration and braking patterns. These data are merged and analyzed with information on frequency of battery charging, and location of charging stations, to aid in better design of the next generation of vehicles and charging infrastructure 1,4 . In the hotel industry, certain chains merge and analyze weather and airline flight cancellation data, along with information on geographic location of their hotels.…”

Section: The Era Of Big Datamentioning

confidence: 99%

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Report of the National Heart, Lung, and Blood Institute Working Group

et al. 2016

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The National Heart, Lung, and Blood Institute convened a Working Group in January 2015 to explore issues related to an integrated data network for congenital heart disease (CHD) research. The overall goal was to develop a common vision for how the rapidly increasing volumes of data captured across numerous sources can be managed, integrated, and analyzed to improve care and outcomes. This report summarizes the current landscape of CHD data, data integration methodologies used across other fields, key considerations for data integration models in CHD, and the short- and long-term vision and recommendations made by the Working Group.

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Section: The Era Of Big Datamentioning

confidence: 99%

Section: The Era Of Big Datamentioning

confidence: 99%

Section: The Era Of Big Datamentioning

confidence: 99%

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Report of the National Heart, Lung, and Blood Institute Working Group

et al. 2016

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“…Numerous large databases are now available that can be leveraged to study pediatric heart failure and HTx [1–3] including a variety of clinical registries, administrative databases, and research datasets [2]. While usage of such resources has provided critical insight into pediatric HTx care, each database has inherent limitations [1, 4].…”

Section: Introductionmentioning

confidence: 99%

“…While usage of such resources has provided critical insight into pediatric HTx care, each database has inherent limitations [1, 4]. Linking databases provides an opportunity to leverage the strengths of each database and to expand the possible analyses that can be performed.…”

Section: Introductionmentioning

confidence: 99%

A unique linkage of administrative and clinical registry databases to expand analytic possibilities in pediatric heart transplantation research

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Thurm

Dodd

et al. 2017

American Heart Journal

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Background Large clinical, research, and administrative databases are increasingly utilized to facilitate pediatric heart transplant (HTx) research. Linking databases has proven to be a robust strategy across multiple disciplines to expand the possible analyses that can be performed while leveraging the strengths of each dataset. We describe a unique linkage of the Scientific Registry of Transplant Recipients (SRTR) database and the Pediatric Health Information System (PHIS) administrative database to provide a platform to assess resource utilization in pediatric HTx. Methods All pediatric patients (1999–2016) who underwent HTx at a hospital enrolled in the PHIS database were identified. A linkage was performed between the SRTR and PHIS databases in a stepwise approach using indirect identifiers. To determine the feasibility of using these linked data to assess resource utilization, total and post-HTx hospital costs were assessed. Results A total of 3188 unique transplants were identified as being present in both databases and amenable to linkage. Linkage of SRTR and PHIS data was successful in 3057 (95.9%) patients, of whom 2896 (90.8%) had complete cost data. Median total and post-HTx hospital costs were $518,906 (IQR $324,199 – $889,738) and $334,490 (IQR $235,506 – $498,803) respectively with significant differences based on patient demographics and clinical characteristics at HTx. Conclusions Linkage of the SRTR and PHIS databases is feasible and provides an invaluable tool to assess resource utilization. Our analysis provides contemporary cost data for pediatric HTx from the largest U.S. sample reported to date. It also provides a platform for expanded analyses in the pediatric HTx population.

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Cardiac Networks United: an integrated paediatric and congenital cardiovascular research and improvement network

et al. 2018

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Optimising short-and long-term outcomes for children and patients with CHD depends on continued scientific discovery and translation to clinical improvements in a coordinated effort by multiple stakeholders. Several challenges remain for clinicians, researchers, administrators, patients, and families seeking continuous scientific and clinical advancements in the field. We describe a new integrated research and improvement network -Cardiac Networks Unitedthat seeks to build upon the experience and success achieved to-date to create a new infrastructure for research and quality improvement that will serve the needs of the paediatric and congenital heart community in the future. Existing gaps in data integration and barriers to improvement are described, along with the mission and vision, organisational structure, and early objectives of Cardiac Networks United. Finally, representatives of key stakeholder groupsheart centre executives, research leaders, learning health system experts, and parent advocatesoffer their perspectives on the need for this new collaborative effort.Clinical outcomes for children and patients with CHD improved considerably over the past several decades. However, several domains still pose a challenge to clinicians and researchers seeking to optimise care and outcomes for these children and families. Early morbidity and mortality remain high for patients undergoing high-complexity surgery. Data on outcomes from across the lifespan are scant, but those that exist suggest burdensome physical and functional morbidities across multiple domains. Finally, there remains substantial variability in care, outcomes, and costs across hospitals in providing care for these patients.To find a mechanism to address these challenges, the field of paediatric and CHD has invested considerably in recent years to improve data capture and analysis from multiple sources in order to learn and improve. Although these efforts have led to several notable advances, 1-6 important limitations remain. These include lack of integration across data sources that limits our capabilities to drive discovery across the lifespan, limited mechanisms to translate knowledge gained from these data into tangible improvements in patient care and outcomes, and the overall cost and sustainability of such efforts. Many children's hospitals that participate in clinical data registries and other networks report spending in excess of $500,000-1,000,000 per year to support the necessary personnel and infrastructure, and the key stakeholders have voiced concerns regarding inadequate return on that investment in relation to scientific discovery and improvements in clinical outcomes. A new paradigm for this work is necessary to maximise the value of these data and accelerate discovery and Cardiology in the Young

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Can linking databases answer questions about paediatric heart failure?

Cited by 9 publications

References 39 publications

Report of the National Heart, Lung, and Blood Institute Working Group

Report of the National Heart, Lung, and Blood Institute Working Group

A unique linkage of administrative and clinical registry databases to expand analytic possibilities in pediatric heart transplantation research

Cardiac Networks United: an integrated paediatric and congenital cardiovascular research and improvement network

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