# Presentation: 043342

## MCHB Activities to Integrate Newborn Screening & Other Child Health Information Systems

- Deborah Linzer
- Senior Public Health Analyst
- U.S. Department of Health & Human Services
- Health Resources & Services Administration
- Maternal & Child Health Bureau
- Division of Services for Children with Special Health Needs
- Genetic Services Branch

## Importance of Integrated Child Health Information Systems

- Health & health services can be improved by assuring timely provision of accurate & comprehensive information.
- Currently, information is often not timely & is usually fragmented.

**Notes:**
It is expected that integrated child health information systems will facilitate entry into a community based system of services for all children and their families resulting in an improvement in their health and quality of life by assuring the timely provision of accurate and comprehensive information.
Currently, information is often not timely and is usually fragmented.

## Goal & Desired Outcome

- Goal: To facilitate entry into the community based system of services needed by infants identified through NBS & their families.
- Outcome: Improvement in the health & quality of life for newborns & children with or at risk for genetic disorders & their families.

**Notes:**
Toward this end, the Maternal and Child Health Bureau has embarked on a major effort to facilitate the development of public health infrastructure to enhance and expand newborn screening programs and to improve linkages among them and the state and community systems of care for children with special health needs. Our goal is to facilitate entry into the community based system of services needed by infants identified through newborn screening and their families. Because of these efforts, we anticipate an improvement in the health and quality of life for newborns and children with or at risk for genetic disorders and their families. 

## Newborn Screening

- Approximately 4 million infants are born yearly in the United States & are screened to detect conditions that threaten their life & long-term health.
- Early detection, diagnosis, & treatment of these conditions may prevent a child’s death, serious illness, or disability.
- AAP, Newborn Screening Task Force. *Pediatrics*. 2000(Suppl);106:389-427

**Notes:**
Dr. Robert Guthrie’s development, in the early 1960’s, of a simple test for screening large populations for phenylketonuria – PKU – marked the beginning of universally accepted, population-based newborn and genetic screening programs and signaled the integration of genetic testing into public health programs.  Since that time, each year approximately 4 million U.S. infants go through mandated State-based newborn universal blood spot screening to detect congenital and genetic conditions that may threaten their life and long-term health. Early detection, diagnosis, and treatment of these conditions may prevent a child’s death, serious illness, or disability.

## Newborn Screening System

- Essential Components:
- Initial screening
- Immediate follow-up testing of screen-positive newborn
- Diagnosis confirmation
- Immediate & long-term care
- Evaluation of all components of the system
- Therrell, BL et al, *Screening*. 1992;1:135-147

**Notes:**
For newborn screening to be effective, it must function as a comprehensive, coordinated and seamless system consisting of education, testing, follow-up, diagnosis, treatment/management, and evaluation. 

## Physician Awareness, Involvement, Interaction with NBS System

- Survey respondents (n=574):
- Physicians are generally satisfied with the NBS system’s ability to retrieve screen-positive infants for follow-up testing.
- Communication of screen results between the NBS program & the pediatrician is less than optimal.
- 31% - notification of screen-positive test results >10 days.
- 26% - do not receive results of screen-negative tests.
- 28% - do not actively seek results of newborn screens, “no news is good news.”
- Desposito et al, *Pediatrics*. 2001;108:1-8

**Notes:**
New issues and challenges to newborn screening systems are now emerging due to recent trends in diagnostic capability, technology, society, and changes in the health care system. While newborn screening remains State-based, roles and responsibilities for the State public health program and private clinician vary widely. Publicly funded infant and child health programs often operate independently of one another, requiring the collection of duplicative information leading to fragmented services.  A study by Desposito et al, found that communication of screening results between the newborn screening program and the pediatrician is less than optimal.  Although pediatricians typically make an effort to track down the missing results for newborns in their practice, there are pediatricians that interpret the lack of reporting as a negative result. 

## Task Force on Newborn Screening

- Convened by American Academy of Pediatrics (AAP) at the request of MCHB, 1999
- Co-sponsors:
- National Institutes of Health (NIH)
- Centers for Disease Control & Prevention (CDC)
- Agency  for Health Care Research & Quality (AHRQ)
- Genetic Alliance
- Association of State & Territorial Health Officials (ASTHO)
- Association of Maternal &  Child Health Programs (AMCHP)
- Association of Public Health Laboratories (APHL)
- AAP, Newborn Screening Task Force. *Pediatrics*. 2000(Suppl);106:389-427

**Notes:**
To address these challenges, a national Task Force on Newborn Screening was convened by the American Academy of Pediatrics with funding from and at the request of the Bureau to outline a national agenda for strengthening State newborn screening programs to include the development of public health infrastructure and integrate newborn screening systems with the health care delivery system.

## Task Force on Newborn Screening Key Recommendations

- Effective NBS systems require an adequate PH infrastructure & must be integrated with the health care delivery system.
- PH agencies must involve health professionals, families, & the general public in the development, operation & oversight of NBS systems.
- PH agencies must ensure adequate infrastructure & policies for surveillance & research related to NBS.
- PH agencies should ensure adequate financing mechanisms to support a NBS program.
- AAP, Newborn Screening Task Force. *Pediatrics*. 2000(Suppl);106:389-427

**Notes:**
The Task Force developed four key recommendations, emphasizing that improved coordination and integration of information systems is needed. Specifically, the Task Force recommended that grants from HRSA “facilitate and foster the involvement of newborn screening systems in infrastructure development activities in States...(and) encourage States to consider integration of heelstick programs with a core set of other newborn programs.....” Furthermore, they stated that “State public health agencies, working under legislative authority, have the ongoing responsibility to ensure quality and evaluate program effort.” 

## Evolution of a Child Health Profile

- Integration of population-based & program specific newborn screening data with other child health information systems for:
- Needs assessments
- Personal health data access
- Linkage of clinically useful data to optimize the delivery of care
- Decision-making support for physicians at the time & point of service
- Continuous quality improvement

**Notes:**
In response to these recommendations, the Bureau is leading federal efforts to strengthen State newborn screening systems by providing financial and technical support to States to coordinate and integrate newborn screening programs, including information, data and services through public--private, federal--state, and intrastate partnerships with community-based health care delivery systems. These child health information systems are unique in that they are intended to provide real-time information to serve public health and medical care needs; a child health profile on all children. The privacy and security of data in this process is of paramount concern; this includes issues relating to compliance with the Health Insurance Portability and Accountability Act of 1996 more commonly known as HIPAA.

## MCHB Activities & Products

- Title V supported Special Projects of Regional & National Significance
- Genetic Services Branch (GSB)
- Planning Grants to 22 States
- Implementation Grants to 11 States
- GSB/Office of Data Information & Management
- Joint Program Initiative Grants to 5 States
- Sourcebook for Planning & Development
- A Tool for Assessment & Planning
- Framework for Integrating Child Health Information Systems
- Community of Practice

**Notes:**
This initiative has encompassed several activities & resulting products. To date, 25 State public health programs have received funding though Title V special projects of regional and national significance to improve the coordination and integration of newborn screening information systems with other maternal and child health information systems.  The Bureau, in partnership with All Kids Count -- a program of the Public Health Informatics Institute supported by The Robert Wood Johnson Foundation -- completed a qualitative assessment of these public health programs and their planning efforts to integrate.  The results are being translated into a framework for integration -- that is, a rationale or business case addressing the need for integration, a logical description of essential functions that such systems must support, ultimately a set of system requirements that will guide you in developing such systems, and measures that tell us if the system is supporting its intended improvements in child health.  Our partnership with the Institute will continue with a newly funded project to develop a community of practice to assist public health programs in moving their integrated child health information systems forward. 

## “The purpose of integrated information systems is to facilitate assessment & prompt provision of appropriate services to ensure an optimal healthy start for all children & improve the health of children.”

- AKC/PHII. *JPHMP*, 2004: In press

**Notes:**
The Bureau recognizes that the development, implementation, and ongoing support of integrated child health information systems is difficult, expensive, and time intensive, will involve a culture change and perhaps organizational restructuring – that this activity is dynamic and that we are all building the road map at every step. 

## Lessons Learned

- Over-arching conclusions that governmental agencies should bear in mind when considering implementing health information systems integration projects:
- Data are for sharing – assets to share among programs
- Communication is critical – with all stakeholders
- Change is hard – change management strategies to mitigate this challenge increase the likelihood of success
- Public health needs must drive technology – project goals, objectives & functionality must be identified prior to searching for technology solutions
- Stay the course – adoption of new technology is slow, perseverance & patience should pay off
- AKC/PHII, June 2003. Available at: http://www.phii.org/

**Notes:**
	In spite of these truths, we also believe that with a mobile population and frequent changes in health care coverage and the advent of technology – integrated health information systems are essential to improving the quality of health and ensuring a healthy community.  There are a variety of approaches to child health information systems integration.  All efforts to facilitate information sharing between public programs and clinical care should reduce the redundancy in data management systems; improve the coordination of care for these children, and decrease costs and the burden on families and health care professionals. 

## Further Information

- Deborah Linzer, MS
- Senior Public Health Analyst
- Health Resources & Services Administration
- Maternal & Child Health Bureau
- Division of Services for Children with Special Health Needs
- Genetic Services Branch
- Phone:	301.443.1080
- E-mail: 	dlinzer@hrsa.gov