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Items in this list may be obtained from the sources cited. Contact information reflects the most current data about the source that has been provided to the MCH Digital Library.

Displaying records 1 through 20 (22 total).

Benford M. n.d.. MATCH II: A Merged Database for Health and Developmental Disabilities [Final report]. Columbus, OH: Ohio Department of Health, 10 pp.

Annotation: The goal of this project was to improve coordination and continuity of early intervention and health related services to infants and young children who have, or are at risk for, developmental disabilities or delays. The project developed a collaborative mechanism via computer linkage for referring, tracking, and evaluating these children. A microbased computerized identification, referral, and tracking system has been developed for use at the local level. Through the merged database and tracking system, the project sought to improve child find, service coordination, follow-along, and program evaluation. [Funded by the Maternal and Child Health Bureau]

Contact: National Technical Information Service, O.S. Department of Commerce, 5301 Shawnee Road, Alexandria, VA 22312, Telephone: (703) 605-6050 Secondary Telephone: (888) 584-8332 E-mail: [email protected] Web Site: http://www.ntis.gov Document Number: NTIS PB93-161974.

Keywords: Case Management, Collaboration of Care, Computer Linkage, Data Bases, Data Collection, Developmentally Delayed/Disabled, EPDST, Early Intervention, Families, High risk infants, Medicaid, Referrals, WIC Program

RAND Health Care . 2023 . Linking state Medicaid data and birth certificates for maternal health research. Washington, DC: U.S. Department of Health and Human Services, Office of the Assistant Secretary for Planning and Evaluation, 40 pp.

Annotation: This report describes efforts to engage selected state and national technical experts and leaders in developing standard methodology and procedures for linking and accessing Medicaid and birth certificate data. It also describes a research agenda of maternal health topics discussed and selected by state and federal participants in the project.

Contact: Rand Corporation, 1776 Main Street, Santa Monica, CA 90407-3208, Telephone: (310) 393-0411 Fax: 310-393-4818 E-mail: [email protected] Web Site: http://www.rand.org

Keywords: Data linkage, Federal Initiatives, Maternal health, Research, State initiatives, data collection

RAND Health Care . 2022. Linking Medicaid claims, birth certificates, and other sources to advance maternal and infant health. Washington, DC: U.S. Department of Health and Human Services, Office of the Assistant Secretary for Planning and Evaluation, 60 pp.

Annotation: This report examines state-based policies and activities linking Medicaid claims and live birth certificate data; identifies examples of states that have conducted and validated such linkages; describes barriers that hinder data linkages and strategies for improving linkage efforts; and explores the use of linked databases for patient-centered outcomes research in the field of maternal and infant health. The findings are based on structured literature reviews and discussions with select state representatives involved in data linkage efforts.

Contact: Rand Corporation, 1776 Main Street, Santa Monica, CA 90407-3208, Telephone: (310) 393-0411 Fax: 310-393-4818 E-mail: [email protected] Web Site: http://www.rand.org

Keywords: , Data collection, Data linkage, Data sources, State initiatives

Epstein D. 2020. Navigating data systems when integrating home visiting data. Bethesda, MD: Early Childhood Data Collaborative, 5 pp.

Annotation: This resource discusses common ways home visiting data are stored at the state and local levels and provides recommendations for how data integration leaders can navigate these data storage systems when integrating home visiting data with other early childhood data.

Contact: Early Childhood Data Collaborative, c/o Child Trends, 7315 Wisconsin Avenue, Suite 1200, Bethesda, MD 20814, Telephone: (240) 223-9329 E-mail: [email protected] Web Site: http://www.ecedata.org Available from the website.

Keywords: Data collection, Data linkage, Home visiting

King C, Perkins V, Nugent C, Jordan E. 2018. 2018 State of state early childhood data systems . Bethesday, MD: Early Childhood Data Collaborative, 47 pp.

Annotation: This report summarizes the results of a national survey to assess states' ability to link data systems related to government-funded early childhood education (ECE) programs and services. The updated information on states' progress in integrating their data systems is intended to help policy makers answer early childhood policy questions aimed at improving access to services, the quality of ECE programs, and the effectiveness of interventions.

Contact: Early Childhood Data Collaborative, c/o Child Trends, 7315 Wisconsin Avenue, Suite 1200, Bethesda, MD 20814, Telephone: (240) 223-9329 E-mail: [email protected] Web Site: http://www.ecedata.org Available from the website.

Keywords: Data linkage, Early childhood education, Health agencies, Integrated information systems, National surveys, School systems, Social service agencies, State programs

Murphy C, Grannemann K. 2017. Title V data integration toolkit. Washington, DC: Association of Maternal and Child Health Programs,

Annotation: This toolkit is a collection of resources that aims to assist states as they integrate Title V data into Early Childhood Integrated Data Systems (ECIDS). The toolkit consists of tip sheets, data integration use cases, and state examples.

Contact: Association of Maternal and Child Health Programs, 1825 K Street, N.W., Suite 250, Washington, DC 20006-1202, Telephone: (202) 775-0436 Fax: (202) 478-5120 E-mail: [email protected] Web Site: http://www.amchp.org Available from the website.

Keywords: Case studies, Data linkage, Early childhood development, Early childhood education, Integrated information systems, Interagency cooperation, Program coordination, Program improvement, State programs, Systems development, Title V programs

Lee E, Hutchison L, Burgess K. 2016. The integration of early childhood data: State profiles and a report from the U.S. Department of Health and Human Services and the U.S. Department of Education. [Washington, DC]: U.S. Administration for Children and Families, 46 pp.

Annotation: This report provides a vision for integrated early childhood (EC) data and explains how states can use integrated data to inform decisions. The report also covers key considerations when integrating and linking EC data based on best practices from the field and lessons learned from eight states that are actively engaged in developing integrated EC data systems. Details about the eight profiled states (Georgia, Maryland, Minnesota, North Carolina, Oregon, Pennsylvania, Rhode Island, and Utah), federal resources to support data integration, data privacy laws and regulations, and data sharing opportunities are included.

Contact: U.S. Administration for Children and Families, 370 L'Enfant Promenade, S.W., Washington, DC 20447, Telephone: (202) 401-9215 Secondary Telephone: (800) 422-4453 Web Site: http://www.acf.hhs.gov Available from the website.

Keywords: Data linkage, Decision making, Early childhood development, Early childhood education, Federal initiatives, Integrated information systems, Interagency cooperation, Learning, Program coordination, Program improvement, Public policy, Quality assurance, State initiatives, Systems development, Young children

Spencer A, Freda B, McGinnis T, Gottlieb L. 2016. Measuring social determinants of health among Medicaid beneficiaries: Early state lessons. Hamilton, NJ: Center for Health Care Strategies, 13 pp.

Annotation: This brief explores state-based efforts to collect and use social determinants of health (SDOH) data including what data health plans and providers are required to collect. Topics include early state efforts to define SDOH and collect information; state efforts to select SDOH measures; using SDOH data at the patient and population level; challenges to collecting, sharing, and using SDOH information; and considerations for advancing SDOH measurement approaches.

Contact: Center for Health Care Strategies, 200 American Metro Boulevard, Suite 119, Hamilton, NJ 08619, Telephone: (609) 528-8400 Fax: (609) 586-3679 Web Site: http://www.chcs.org Available from the website.

Keywords: Accountability, Data collection, Data linkage, Environmental exposure, Environmental influences, Financing, Health behavior, Low income groups, Measures, Medicaid, Model programs, Outcome and process assessment, Policy development, Reimbursement, Risk assessment, Risk factors, Service delivery systems, Social conditions, Socioeconomic factors, State programs

Early Childhood Data Collaborative. 2014. 2013 state of states' early childhood data systems. Bethesda, MD: Early Childhood Data Collaborative, 31 pp.

Annotation: This 2013 report presents findings from a survey to assess state early childhood data systems. The report focuses on state data systems' ability to securely link child-level early childhood education (ECE) data across ECE programs and to K-12, health, and social services data systems. Topics include states collecting state-level developmental screening, assessment, and kindergarten entry assessments; status of state ECE data governance structure, authority, and function; and action steps for policymakers and practitioners.

Contact: Early Childhood Data Collaborative, c/o Child Trends, 7315 Wisconsin Avenue, Suite 1200, Bethesda, MD 20814, Telephone: (240) 223-9329 E-mail: [email protected] Web Site: http://www.ecedata.org Available from the website.

Keywords: Data linkage, Early childhood education, Health agencies, Integrated information systems, National surveys, School systems, Social service agencies, State programs

Institute of Medicine, Committee on the Recommended Social and Behavioral Domains and Measures for Electronic Health Records. 2014. Capturing social and behavioral domains in electronic health records: Phase 1. Washington, DC: National Academies Press, 130 pp.

National Center for Injury Prevention and Control. 2014. The relationship between bullying and suicide: What we know and what it means to schools. Atlanta, GA: National Center for Injury Prevention and Control, 9 pp.

Annotation: This document provides information to improve schools' understanding of and ability to prevent and respond to bullying- and suicide-related behaviors. Contents include research on bullying and suicide, and what school personnel can do and where they can find more information.

Contact: National Center for Injury Prevention and Control, Centers for Disease Control and Prevention, 4770 Buford Highway, N.E., Mailstop F-63, Atlanta, GA 30341-3717, Telephone: (800) CDC-INFO Secondary Telephone: (888) 232-6348 Fax: (770) 488-4760 E-mail: [email protected] Web Site: http://www.cdc.gov/injury/index.html Available from the website.

Keywords: Adolescent mental health, Bullying, Child mental health, Data linkage, Prevention, Suicide, Youth

Virginia Commonwealth University, Center on Society and Health. 2014. Education: It matters more to health than ever before. Richmond, VA: Virginia Commonwealth University, Center on Society and Health, 7 pp. (Issue brief)

Virginia Commonwealth University, Center on Society and Health. 2014. Why education matters to health: Exploring the causes. Richmond, VA: Virginia Commonwealth University, Center on Society and Health, 9 pp. (Issue brief)

Annotation: This issue brief provides an overview of what research shows about the links between education and health alongside the perspectives of residents of a disadvantaged urban community in Richmond, Virginia.

Contact: Virginia Commonwealth University, Center on Society and Health, 830 East Main Street, Suite 5035, P.O. Box 980212, Richmond, VA 23296-0212, Telephone: (804) 628-2462 Web Site: http://societyhealth.vcu.edu Available from the website.

Keywords: Cost effectiveness, Data linkage, Education, Health status, Local programs, Minority health, Virginia

Children's Health Care Quality Measures Core Set Technical Assistance and Analytic Support Program. 2014. Strategies for using vital records to measure quality of care in Medicaid and CHIP programs. Baltimore, MD: U.S. Centers for Medicare & Medicaid Services, 11 pp. (Technical assistance brief; no. 4)

Annotation: This technical assistance brief discusses strategies for accessing vital records for quality measurement and improvement efforts related maternal and infant health care in Medicaid and the Children's Health Insurance Program. The brief also gives guidance and describes resources available to states for linking vital records and Medicaid/CHIP data to increase states' capacity to report two measures in the core set of children's health care quality measures: low birth weight rate and Cesarean section rate.

Contact: U.S. Centers for Medicare & Medicaid Services, 7500 Security Boulevard, Baltimore, MD 21244, Telephone: (877) 267-2323 Secondary Telephone: (410) 786-3000 Fax: Web Site: https://www.cms.gov Available from the website.

Keywords: Cesarean section, Children', Data linkage, Low birthweight, Measures, Medicaid, Program improvement, Public health infrastructure, Quality assurance, Resources for professionals, Technical assistance, Vital statistics, s Health Insurance Program

Dorn S, Isaacs S, Minton S, Huber E, Johnson P, Buettgens M, Wheaton L. 2013. Overlapping eligibility and enrollment: Human services and health programs under the Affordable Care Act. Washington, DC: U.S. Department of Health and Human Services, Office of the Assistant Secretary for Planning and Evaluation, 51 pp.

Annotation: This paper investigates opportunities for program integration and coordination in states that implement Medicaid expansion. The analysis shows how human services programs could benefit from linkages with insurance affordability programs and how health programs could benefit from linkages with human services programs. The appendices provide a framework for analyzing strategies that link programs to facilitate eligibility determination, enrollment, and retention; a program-by-program comparison of eligibility requirements and methods; a description of the microsimulation methodology; and additional results.

Contact: U.S. Department of Health and Human Services, Office of the Assistant Secretary for Planning and Evaluation, Hubert H. Humphrey Building, 200 Independence Avenue, S.W., Room 415 F, Washington, DC 20201, Web Site: http://aspe.hhs.gov Available from the website.

Keywords: Data linkages, Eligibility determination, Enrollment, Health care reform, Health insurance, Patient Protection and Affordable Care Act, Program coordination, Retention, State programs

Friese S, King C, Tout K. 2013. INQUIRE data toolkit. Washington, DC: U.S. Administration for Children and Families, Office of Planning, Research, and Evaluation, 137 pp.

Annotation: This toolkit comprises a guide and a dictionary for building an effective data infrastructure to support activities including monitoring, reporting, and evaluating state early care and education efforts. The guide contains key questions in early care and education, an overview of common data elements needed to address the questions, and analytic recommendations for answering the question. The dictionary provides information on data elements including level (child, family, practitioner, class/group, program site, organization, and system); category (e.g., program management, credentialing and licensure); definition; codes and options; and alignment with federal reporting requirements or parallel data collection efforts.

Contact: U.S. Administration for Children and Families, Office of Planning, Research, and Evaluation, 370 L'Enfant Promenade, S.W., Seventh Floor West, Washington, DC 20447, Web Site: http://www.acf.hhs.gov/opre Available from the website. Document Number: OPRE report # 2013-58.

Keywords: linkage, Child care, Data collection, Early childhood education, Evaluation, Program improvement, Quality assurance, State initiatives

Osborn D, Hinkle L, Hanlon C, Rosenthal J. 2011. Reducing racial and ethnic disparities through health care reform: State experiences. Rockville, MD: U.S. Agency for Healthcare Research and Quality, 10 pp. (Healthcare Cost and Utilization Project (HCUP))

Annotation: This issue brief describes how states can use disparities data to inform their actions and provides examples of how health equity can be integrated into health care reform and insurance exchange implementation. It also discusses key provisions of the Patient Protection and Affordable Care Act of 2010 (ACA) that support the reduction of disparities and the opportunities provided by the ACA for state action. Lessons learned from efforts to integrate disparities reduction in the state of Maryland are highlighted. The brief was prepared by the National Academy of State Health Policy (NASHP) for the Agency for Healthcare Research and Quality (AHRQ).

Contact: U.S. Agency for Healthcare Research and Quality, 5600 Fishers Lane, Rockville, MD 20857, Telephone: (301) 427-1104 Secondary Telephone: (301) 427-1364 Web Site: http://www.ahrq.gov Available from the website.

Keywords: Data, Data linkage, Ethnic factors, Federal legislation, Health care reform, Health status, Minority health, Racial factors, State initiatives, disparities

National Institute of Mental Health, Eunice Kennedy Shriver National Institute of Child Health and Human Development, National Institute of Environmental Health Sciences, National Institute of Neurological Disorders and Stroke, and NIH Center for Information Technology. 2010. National database for autism research. Bethesda, MD: National Institute of Mental Health,

Annotation: This website provides a secure bioinformatics platform for scientific collaboration and data-sharing for autism spectrum disorders (ASD) investigators. Content includes the National Database for Autism Research (NDAR), comprising genetic, imaging, and phenotypic data from multiple sources. Additional content includes information about data sharing, standards, tools, policy and procedures, and training.

Contact: National Institute of Mental Health, 6001 Executive Boulevard, Bethesda, MD 20892-9663, Telephone: (866) 615-6464 Secondary Telephone: (301) 443-8431 Fax: (301) 443-4279 E-mail: [email protected] Web Site: http://www.nimh.nih.gov Available from the website.

Keywords: Autism, Collaboration, Data linkage, Medical research, Online databases, Resources for professionals, Web sites

Kaiser Commission on Medicaid and the Uninsured. 2010. Using schools and data matching to enroll kids in Medicaid and CHIP. Menlo Park, CA: Henry J. Kaiser Family Foundation, 2 pp. (Optimizing Medicaid enrollment: Spotlight on technology)

Annotation: This brief examines efforts by the Chicago Public School System (CPS) to use multiple strategies to comply with the recently enacted health reform law that requires implementation of a coordinated system for determining eligibility for Medicaid and subsidized coverage in the new health insurance exchanges. Strategies examined include data matching with the school lunch program, marketing, and local organizing to target children for outreach and enrollment in public health insurance and other benefits.

Contact: Henry J. Kaiser Family Foundation, 2400 Sand Hill Road, Menlo Park, CA 94025, Telephone: (650) 854-9400 Secondary Telephone: (202) 347-5270 Fax: (650) 854-4800 Web Site: http://www.kff.org Available from the website.

Keywords: Data linkage, Eligibility, Enrollment, Health care reform, Health insurance programs, Illinois, Legislation, Low income groups, Marketing, Medicaid, Outreach, Schools, Service coordination

Public Health Data Standards Consortium. 2007. PRISM: Privacy toolkit for public health professionals. Baltimore, MD: Public Health Data Standards Consortium,

Annotation: This toolkit provides direction for government health entities in applying Health Insurance Portability and Accountability Act privacy regulations to their programs and functions and also in complying with state and federal requirements. The toolkit identifies and defines the baseline conditions and requirements that a state or local government health program must follow when using and disclosing specific types of health information. A series of tables outlines different types and purposes of information use and disclosure and the general legal requirements relevant to each type of use or disclosure. An introduction to the PRISM privacy tool, a glossary containing key definitions and terms related to the disclosure of privacy information, and additional resources are provided.

Contact: Public Health Data Standards Consortium, c/o Johns Hopkins Bloomberg School of Public Health, 624 North Broadyway, Room 382, Baltimore, MD 21205, Telephone: (410) 614-3463 Fax: (410) 614-3097 E-mail: [email protected] Web Site: http://www.phdsc.org/default.asp Available from the website.

Keywords: Adults, Data collection, Data linkage, Informed consent, Oral health, Patient data privacy, Regulation adherence, Regulations, Resources for professionals
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This project is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under grant number U02MC31613, MCH Advanced Education Policy, $3.5 M. This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government.