Integrated Data: Commentaries & Reports

Linked administrative records provide a rich resource for data-driven policy and program decisions. Yet, integrating data from different public agencies also presents ethical, political, operational, and scientific challenges. Understanding potential hurdles, sharing best practices, and developing a knowledge base can help us to realize the vast potential data linkage holds for improving outcomes for children and families.

Assembling The Book of Life Through Record Linkage

Dunn, 1946
This seminal article, published in the American Journal of Public Health in 1946, provides the first discussion of the value of record linkages in an academic journal, describing this process as "assembling the pages of life".

The Value of Integrated, Population-Based Data

Putnam-Hornstein, 2012
This article argues for expanded efforts to integrate administrative data systems as a practical strategy for developing a richer understanding of child abuse and neglect.

Administrative Record Linkage as a Tool for Public Health Research

Jutte, 2011
This article discusses linked administrative databases as tools for studying important public health issues.

The Appropriate Use of Large-scale Data Collections in Pediatrics

Currie, 2013
This article examines the use of vital records, hospital discharge abstracts, insurance claims, and other routinely collected data to answer important pediatric questions.

Finding Pure and Simple Truths With Administrative Data

Sarrazin, 2012
This JAMA editorial discusses the importance of nuanced understandings of administrative data coding to avoid erroneous conclusions.

Rigorous Program Evaluations on a Budget

Coalition for Evidence-Based Policy, 2012
This document discusses the feasibility of conducting low-cost RCTs using administrative data and provides several case examples.

Connecting the Dots: The Promise of Integrated Data

Culhane, 2012
This article explores the use of integrated administrative data systems in support of policy reform through inter-agency collaboration and research.

Creating a Community Resource to Evaluate Programs and Policies

Kitzmiller, 2013
This study details Case Western Reserve University's integrated data system, which covers children up to age 18 living in Cuyaghoga County and includes linked data from numerous public agencies.

Leveraging Chapin Hall's Mission to Enhance Child Well-Being

Kitzmiller, 2013
This case study details Chapin Hall's Integrated Database on Child and Family Programs in Illinois, which connects administrative data to provide a comprehensive picture of child and family use of service programs.

Record Linkage: Technical Documents

Historically, administrative data were maintained as paper records and their utility for purposes of research and evaluation were limited. Paper records were burdensome to compile, expensive to share, and had many clerical errors. Technological advances in computing, however, now make administrative records an increasingly valuable source of data for research.

The Health Insurance Portability and Accountability Act of 1996 (HIPAA): Implications for Research with Administrative Records

Cuccaro-Alamin, 2016
This technical report outlines the cases in which protected health information (PHI) can – and cannot – be used for research purposes.

The Family Educational Rights Privacy Act of 1974 (FERPA): Implications for Research with Administrative Records

Cuccaro-Alamin, 2016
This technical report outlines the cases in which personally identifiable information (PII) can – and cannot – be used for research purposes.

An Overview of Record Linkage

Herzog, 2010
This article discusses methods for matching duplicates within or across files using non-unique identifiers.

Record Linkages Focusing on Infant Health Outcomes

Machado, 2004
This article reviews record linkage methodologies and discusses the purpose and research applications of linked records for studying infant health outcomes.

Sharing Data While Protecting Privacy

Zients, 2010
This 2010 memo from the Executive Office of the President, Office of Management and Budget, directs the sharing of data for research purposes subject to appropriate safeguards.

An Overview of Record Linkage and Current Research Directions

Winkler, 2006
This document provides background on record linkage methodologies that can be used to combine data from a variety of sources (published by the US Bureau of the Census).

A Comparison of Record Linkage Software Programs

Campbell, 2008
Comparing the accuracy of two probabalistics linkage software programs in the public domain (Link Plus and Link King) with a deterministic approach.

Legal Issues in the Use of Data Systems for Social Science Research

Petrila
This manuscript provides an overview of legal issues in using and linking large datasets for social science research.

Record Linkage and Privacy

US General Accounting Office, 2001
This GAO report discusses record linkage as a means for creating new federal research and statistical information.

An Overview of Integrated Data Systems Implementation

Kumar
This manuscript discusses the potential applications of linked administrative data in policy-level and case-level decision making.

Linked Analyses: Research Examples

The inability to cross agency data “silos” has long undermined efforts to evaluate the collective size and impact of program investments, and has restricted assessments of population needs that would allow for resources to be strategically (and equitably) allocated. Yet, increasingly, linked data are advancing our understanding of child population dynamics, allowing us to connect the dots for children over time and across service systems.

Prediction of Child Abuse Risk from Emergency Department Data

Gunther, 2005
This study examined whether pre-abuse rates and patterns of emergency department visits are a useful marker of subsequent child maltreatment using linked data from Utah.

Use of Spatial Epidemiology to Target Women Eligible for WIC

Stopka, 2014
This study used linked birth and WIC data to identify clusters of WIC-eligible non-participants for enhanced public health targeting.

Early Childhood Lead Exposure and Academic Achievement

Zhang, 2013
This study assessed the long-term effect of early childhood lead exposure on academic achievement using linked childhood blood lead testing records and educational testing data from Detroit, Michigan.

Prenatal Home Visiting on Pregnancy Outcomes

Goyal, 2013
This study assessed the effect of home visiting dosage on pre-term birth and small for gestational age infants using linked vital statistics, hospital discharge, and home visiting data.

Targeting of Homelessness Prevention Services for Families

Shinn, 2013
This study developed and evaluated a model to better target homelessness prevention services to families based on linked homeless service and family shelter records from NYC.

Early Screening and Infant Health Outcomes

Pittard, 2007
This study used linked birth and Medicaid records from South Carolina to explore whether infants experiencing the recommended number of EPSDT visits had better health outcomes.

Cumulative Risk and Children's Language Development

Stanton-Chapman, 2004
This study relied on linked birth records and a preschool language assessment to examine the relationship between the number of risk factors documented at birth and later language development.

Data Resources

Data and information are key to improving the well-being of children and youth, families, and communities. The following projects are among our favorite for their use of data for research and evaluation, program and policy development, and advocacy.

International Population Data Linkage Network

(IPDLN) facilitates communication between centers that specialize in data linkage and users of the linked data.

Chapin Hall

Chapin Hall at the University of Chicago aims to improve the well-being of children and youth, families, and their communities through policy research.

Policylab

The mission of PolicyLab at The Children’s Hospital of Philadelphia is to achieve optimal child health and well-being by informing program and policy changes through interdisciplinary research.

Kidsdata.org

Kidsdata.org promotes the health and well-being of children in California by providing an easy to use resource that offers high-quality, wide-ranging, local data to those who work on behalf of children.

Healthy City

Healthy City is an information resource that unites community voices, rigorous research and innovative technologies to address root causes of social inequity.

Kids Count

Kids Count provides high-quality data and trend analysis to enrich local, state and national discussions concerning ways to secure better futures for all children — and to increase the visibility of children's issues through a nonpartisan, evidence-based lens.

The Heckman Equation

The Heckman Equation shares the entire body of work from Nobel Prizer Winner Professor James Heckman to serve as a resource to those promoting the value of investing in early childhood development.

The Data Resource Center

The Data Resource Center takes the opinions and perspectives of parents, gathered by the National Survey of Children’s Health and the National Survey of Children with Special Health Care Needs, and shares the results through this free online resource.

Child Trends

The Child Trends research center has provided valuable information and insight on the well-being of children and youth for more than 30 years to policymakers, funders, educators and service providers in the U.S. and around the world to improve policies and programs serving children and youth.

Childstats.gov

ChildStats.gov fosters coordination and collaboration to enhance and improve consistency in the collection and reporting of Federal data on children and families.

The Center on the Developing Child

The Center on the Developing Child leverages the rapidly growing knowledge on the developing human brain to drive science-based innovation that achieves breakthrough outcomes for children facing adversity.

Partners for our Children

Partners for Our Children focuses on new thinking, resources and expertise for Washington state’s child welfare system. They share research findings, disseminate new works, and offer a neutral space where the child welfare community can freely exchange ideas about critical issues affecting children.

The Center for Violence and Injury Prevention

The Center for Violence and Injury Prevention promotes healthy young families and healthy young adults by advancing evidence-based violence prevention through education, research, & training activities.

The Population Dynamics Research Group

The Population Dynamics Research Group uncovers demographic trends that drive major changes in society, providing insight that leads to effective policies. These population patterns underlie areas as diverse as housing, immigration, education, health, labor, transportation, the environment, and urban growth.

The Telethon Kids Institute

The Telethon Kids Institute is one of the largest medical research institutes in Australia and the first to adopt a multidisciplinary approach to major health issues: clinical research, laboratory sciences and epidemiology are all practiced under one roof in order to address complex diseases and other concerns.

Institute for Research on Poverty

IRP is a center for interdisciplinary research into the causes and consequences of poverty and social inequality in the United States and is based at the University of Wisconsin-Madison.

The Coalition

The Coalition is a nonprofit, nonpartisan organization, whose mission is to increase government effectiveness through the use of rigorous evidence about “what works.”

Diversitydatakids.org

Diversitydatakids.org is a state-of-the-art research project designed to meet the urgent need for information source that helps us understand: who our children are; what our children need; and how to improve opportunities for all children, especially those that may need the most help.

The Minn-LInK

The Minn-LInK project uses state administrative data from multiple agencies to answer questions about the impacts of policies, programs, and practice on the well-being of children in Minnesota.

Children Now

Children Now’s mission is to find common ground among influential opinion leaders, interest groups and policymakers, who together can develop and drive socially innovative, “win-win” approaches to helping all children achieve their full potential.
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