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Newborns screened for hyperphenylalaninemia – No. screened4,024,850 No. NOT NORMAL 3,494 No. NOT NORMAL lost to f-u 154 No. Classical PKU or clinically significant variant 302
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Integrating Child Health Information Systems
Alan R. Hinman, MD, MPHAll Kids Count
February 19, 2004
Outline of presentation• Why do we need integrated child health
information systems (CHIS)?• Background on AKC and GSB/HRSA• Integration Sourcebook• Principles and core functions of integrated
CHIS• Current status of integration of CHIS• December 2003 Conference on Developing
Child Health Information Systems to Meet Medical Care and Public Health Needs
Newborns screened for hyperphenylalaninemia – 1999-1
No. screened 4,024,850No. NOT NORMAL 3,494No. NOT NORMAL lost to f-u 154No. Classical PKU or clinically significant variant 302
Newborns screened for hyperphenylalaninemia – 1999-2
3,494 NOT NORMAL – 154 lost to f-u =3,340 NOT NORMAL with f-u ->
302 classical PKU or sig. Variant
3,340/302 = 11 f-u/case
154 NOT NORMAL lost to f-u/11 =14 missed cases??
Days from birth to initiation of Rx - Classical PKUDays No. 0 - 7 38 8 - 14 8715 – 21 30 >21 14
Unknown 18 NR 12 Source: NNSR - 1999
Newborns screened for hypothyroidism – 1999 - 1
No. screened 4,024,850No. NOT NORMAL 52,217No. NOT NORMAL lost to f-u 1,371No. confirmed
1o hypothyroidism 1,550
Newborns screened for hypothyroidism – 1999 - 2
52,217 NOT NORMAL–1,371 lost to f-u=50,846 NOT NORMAL with f-u ->
1,550 1o hypothyroidism =50,846/1,550 = 1 case/32.8 f-u
1,371 NOT NORMAL lost to f-u/32.8 =42 missed cases??
Days from birth to initiation of Rx - 1o hypothyroidism
Days No. 0 - 7 218 8 – 14 45515 – 21 143 >21 225
Unknown 492
Barriers to gaining access to newborn screening results – Desposito et al
• Infants born in hospital where physician does not have privileges
• New transfers to the practice• Infants born in other states• Personnel time to track results• Parents notified before Primary Care Pediatrician• Name change• Absence of direct communication system linking
state newborn screening program to Primary Care Pediatrician
Average time for notification of initial screen-positive result – Desposito et al
Days % 1 - 3 12.5 4 - 7 33.1 8 – 10 16.211 – 14 14.515 – 21 9.4 > 22 4.4 Not 4.5 ? 5.4
Average time for notification of screen-negative result – Desposito et al
Days % 1 - 7 4 8 – 14 1915 - 21 2222 – 28 13 >28 16 Not 26
Conclusions/recommendationsDesposito et al - 1
“All initial screening test results, for infants cared for from birth, need to be communicated to the pediatrician: 7 days for screen-positive results and 10-14 days for all results. Newborn screening test results of new patients who enter the practice should be available at the time of the first well-infant visit, ideally by 2 weeks of age.”
Conclusions/recommendationsDesposito et al - 2
“Augmented communication systems (including electronic systems) are needed to interface the primary care pediatrician directly with the state newborn screening system to enhance timely retrieval of screen-positive newborns, to gain access to follow-up test results, and to provide documentation for all test results, both positive and negative.”
Source: Pediatrics 2001;108:e22
“Putting newborns at risk”
“The science of screening moves faster than the bureaucracy that manages it. A recent state audit found Georgia can’t tell whether all newborns are screened, as required, or whether each infant who tests positively receives the needed follow-up care in a timely manner….in 2001, 38 babies who tested positive for sickle cell disease were not referred for follow-up care.”Source: Miller & Guthrie, AJC, 2/2/03
Greensboro NC Newborn Hearing Screening, 1998-1999
• 175 / 5010 (3.5%) of non-ICU newborns had abnormal screens
• 157 / 175 (89.7%) of abnormal screens had follow-up (18 did not)
• 9 confirmed hearing loss• Ratio of positives to confirmed hearing
loss = 17• ?did any of 18 not f-u have hearing loss?
Source: Pediatrics 2000;106:e7
Why Worry About Immunizations?
• 4 million births/year (11,000/day)• New vaccines keep being added• Population mobility• Changes in providers/plans• Unnecessary (duplicate) immunization• Few providers use reminder/recall• Parents and providers overestimate coverage
Demonstrated usefulness of immunization registries
• Sending reminder/recall notices to children
• Generating official immunization records• Assessing immunization levels (HEDIS)• Reducing missed opportunities• Preventing unnecessary immunization• Recall for re-vaccination• Vaccine inventory management
Impact of immunization registryin an HMO - 1
• HealthPartners, Minneapolis
• Compared coverage in 2-year-olds in staff model HMO with registry and affiliated clinics without registry
Source: Nordin J, Carlson R 1999 AKC Conference
Impact of immunization registryin an HMO - 2
4-3-1-1 4-3-1-1-21996 1997 1996 1997
Staff 88.2% 95.7% 60.6%87.8%
Affiliates 85.1% 83.9% 70.2%73.7%
• Implementation of the registry led to a decline in average age of MMR from 20 months in 1994 to 13 months in 1999.
• Children are now being protected 7 months earlier than before the registry went into operation.
Registry use inSan Bernardino County
Gogebic
Otonagon
Houghton
Keweenaw
Iron
Baraga
Marquette
Dickinson
Al ger
Del ta
Menominee
School craft
Luce
Mackinac
Chippewa
Cheb oygan
Presque Isle
Charlevoi x
An trim Otsego
Leelanau
BenzieGrand
Traverse Kalkaska Crawford Osco da Al cona
Manistee Wexford Ogemaw Iosco
Mason Lake Osceol a ClareGladwin
Arenac
Oceana Newaygo Mecosta IsabellaMidland
Bay
Huron
MuskegonMontcalm Gratiot Sagi naw
Tuscola Sani lac
St. Clair
Lapeer
ShiawasseeClintonIon ia
Kent
Ottawa
Al legan Barry Eaton Ing ham Livi ngston Oakland
Macomb
VanBuren
Kalamazoo Calhoun Jackson Washtenaw Wayne
Berrien Cass Hillsdal e Lenawee MonroeSt. Joseph Branch
Mi ssaukee
Alpena
Roscommon
Emmet
Genesee
Montmorency
October 2003
Detroit
Gogebic
Otonagon
Houghton
Keweenaw
Iron
Baraga
Marquette
Dickinson
Alger
Del ta
Menom inee
Schoolcraft
Luce
Macki nac
Chippewa
Cheb oygan
Presque Isle
Charl evoi x
An trim Otsego
Leelanau
BenzieGrand
Traverse Kalkaska Crawford Osco da Alcona
Manistee Wexford Ogemaw Iosco
Mason Lake Osceola ClareGladwin
Arenac
Oceana Newaygo Mecosta IsabellaMidland
Bay
Huron
MuskegonMontcalm Gratiot Sagi naw
Tuscola Sani lac
St. Clair
Lapeer
ShiawasseeClintonIon ia
Kent
Ottawa
Al legan Barry Eaton Ing ham Livingston Oakland
Macomb
VanBuren
Kal amazoo Cal houn Jackson Washtenaw Wayne
Berrien Cass Hill sdale LenaweeMonroe
St. Joseph Branch
Missaukee
Alpena
Roscom mon
Em met
Genesee
Montmo rency
January 2001
Detroit
0 - 29%
50 - 59%
60 - 69%
70 - 79%
80% and above
30 - 49%
Current Immunization Profile for 19-35 Month Old Children by County for 4:3:1:3:3, Based on MCIR Data
0%
10%
20%
30%
40%
50%
60%
70%
80%
MCIR 4:3:1:3:3 Immunization Rates by MI Region
Region 5Region 6Region 2Region 4Region 3State
Region 1
Jan 01 Jul 01 Jan 02 Jul 02 Jan 03 Jul 03
Goal of integrated CHIS
• To provide all appropriate information to patients/families, providers, and programs
• Complete, accurate & timely information leading to improved service delivery and health outcomes for children
Linkage & Integration• ?linkage - modifying existing information systems
to exchange information• ?integration - comprehensive systems built with,
perhaps, individual components• Integration - providing a range of information to
the end user in a simple yet comprehensive format so he/she can readily take all appropriate actions
• Integration does not imply a specific technical model
• Integration relates to the end user, not to the background machinery
Letter from CDC & HRSA Dir/Admin to State Health Officers, April 1, 1998
“As a matter of public health policy, ASTHO, NACCHO, CDC, and HRSA endorse the use of CDC and HRSA categorical health grant funds to support the development of integrated health information systems. Such integration will benefit categorical health programs and also address cross-cutting public health information needs.”
All Kids Count background– Funded by The Robert Wood Johnson Foundation ~
$30 million over 12 years– Phase 1 (1992-1997) 24 planning and early
implementation grants to develop immunization registries
– Phase 2 (1998-2000) 16 implementation grants to advance immunization registries to fully operational status
– Phase 3 (2000-2004) to promote the development of integrated preventive health information systems for children
– Public Health Informatics Institute established in 2001 with RWJF funding—AKC now part of PHII
Our approachAs a non-profit, non-governmental organization we…– Act as a neutral convener of stakeholders in public
and private sectors– Provide a field-oriented perspective to issues
facing public health practitioners– Use a collaborative, participatory approach to
problem solving– Stimulate new ideas and innovative solutions—
challenge the status quo– Advocate/educate partners on key issues and
solutions
All Kids Count III goals
Two primary goals:– To develop an action agenda for
integrated child health information systems (CHIS)
– To develop resources and tools to assist public health agencies in development of integrated CHIS
GSB/MCHB Grants since 1998
Purpose to facilitate:• the development of integrated child health
information systems to include newborn screening systems
• the opportunity to improve service delivery to children and their families that is community-based, culturally competent, comprehensive
• the enhancement of the ability to coordinate care across multiple programs and providers
Child Health Profiles - 1
• Goal – to provide up-to-date information about children’s health status to families, health care providers, and public health programs, thereby facilitating appropriate care
• Authorized users can determine at a glance child’s status with respect to all components
• Individual programs can assess information about child’s status with respect to other programs
Child Health Profiles - 2
Start with 4 programmatic areas:• Newborn dried blood spot (NDBS)
screening• Early hearing detection and intervention
(EHDI)• Immunizations• Vital registration
Child Health Profiles - 3
4 areas chosen share characteristics:• Recommended for all infants/children• Carried out/begin in newborn period• Time-sensitive• Primarily delivered in private sector but
have strong public sector component• Mandated in most/all states
Integration of Newborn Screening and Genetic Service Systems with
Other MCH Systems
A Sourcebook for Planningand Development
Prepared byAll Kids Count
Public Health Informatics Institute2002
Key Elements for Success
• Leadership• Project governance• Project management• Stakeholder involvement• Organization and technical strategy• Technical support and coordination• Financial support and management• Policy support• Evaluation
Lessons Learned
• Data are for sharing• Listen up• Change is hard• Let public health program needs drive
technology• Stay the course
Source: Sourcebook
Core Workgroup MeetingMay 8-9, 2003
• Goal – Develop a draft Model of Practice (Framework) for integrating newborn screening systems with other related early child health information systems that includes a comprehensive set of core functions, activities and services
• Objective – To gain agreement on the format of the Model of Practice and draft core functions
Core Workgroup MeetingParticipants - 1
• Delton Atkinson, NCHS• Tonya Diehn, IA• John Eichwald, UT• Jennifer Heberer, ME• Therese Hoyle, MI• Pam King, OK• Robert Cossack, MA• Donna Williams, NNSGRC• Amy Zimmerman, RI
Core Workgroup MeetingParticipants - 2
GSB/MCHB/HRSA• Deborah Linzer• Michele Lloyd-Puryear• Marie Mann
AKC/PHII•Sherry Bolden•Nicole Fehrenbach•Alan Hinman•Janet Kelly•David Ross•Kristin Saarlas
Core Workgroup Meeting - 1
• Framework for Integrating Child Health Information Systems– Set of activities/functions to achieve
desired outcome – improving health of all children
– Focus on integration of selected program information systems
– Builds on approved practices and standards
– Provides minimum set of core functions– Is not a technical model
Core Workgroup Meeting - 2
• Reviewed existing programmatic standards/guidelines/recommendations
• Reviewed existing functional standards (immunization registries)
• Compared 12 registry core functions to immunization standards to see if they will meet the standards (yes)
Core Workgroup Meeting - 3
• Reviewed standards/guidelines/recommendations for other programs and discussed how registry core functions would have to be modified/expanded to meet them
• Developed (with subsequent comments) 19 principles, 22 core functions and 8 desirable functions
Core Workgroup Meeting – 4
• Reviewed service flow and data flow diagrams of different programs to detect commonalities
• Developed (with subsequent comments) combined data flow diagram
Current data exchange between information user and individual
public health programs
AuthorizedInformation
User
Vital Registration
Early HearingDetection &Intervention
ImmunizationProgram
Other PublicHealth Programs
Newborn DriedBlood Spot
Future data exchange between information user and integrated
information system
IntegratedInformation
System
VitalRegistration
Newborn DriedBlood Spot
Early HearingDetection &Intervention
ImmunizationProgram
Other PublicHealth
Programs
AuthorizedInformation
User
Subsequent steps
• Review by external review committee• Further modification• Submission to GSB/MCHB• Presentation to grantees
Points to keep in mind
• Principles/functions refer to integrated systems – individual program systems may have additional functionality
• Do not speak to– System architecture– Data elements– Software
• Address what the functions are, not how they are to be achieved
Principles and Core Functions of Integrated Child Health Information
Systems
Principles underlying integrated child health information systems
• Purpose – 1• Security & confidentiality – 5• Technology serving stakeholder needs– 8• Quality assurance & evaluation – 3• Financing – 2
• Total – 19
Core Functions of Integrated Child Health Information Systems
• Confidentiality & security – 5• Establishing & maintaining client records
– 4• Service functionality – 6• Technical functionality – 4• Reports – 3
• Total – 22
Desirable functions of integrated child health information systems
• Establishing & maintaining client records – 3
• Service functionality – 2• Technical functionality – 1• Reports – 2
• Total – 8
Next steps in developing integrated CHIS
• Agreement on core data sets & information transfer standards
• Development/use of performance measures• Documentation of impact of integrated
systems on outcomes• Development of information on costs &
cost savings• Identification of funding sources to sustain
integrated CHIS
AKC Integration Survey
• 23 HD identified as integrating CHIS– AKC Connections members– GSB/HRSA grantees– 2000 Immunization Registry Annual Report
responses– AIRA Programmatic Registry Operations
Workgroup responses• Telephone interviews April-July 2003• 18 reported current/future integration activities
`
Health Depts
ABCDEFGHIJKLMNOPQR
Total Current 13 13 10 9 7 7 6 6 5 5Total Overall 15 15 13 17 16 8 10 6 6 6
Current and Maintained Integration ActivitiesFuture Integration Activity
Developing Child Health Information Systems to Meet
Medical Care and Public Health Needs
December 3-4, 2003Atlanta GA
Conference sponsorsAKC/PHIIACHPAHCAHPAHRQAAPAMCHPASTHOCDCCommonwealth Fund
Family VoicesHRSAMarch of DimesNACCHONASNNHIINICHQUSDA (FNS)
Conference Objectives - 1
• Review national initiatives and other factors influencing the development of child health information systems infrastructure
• In light of the current situation, develop concrete recommendations, reflecting the input of stakeholders, for the development of:– Immediate actions– Actions for the next 3-5 years
Conference Objectives - 2
• Enlist stakeholders in communicating, supporting, and implementing the recommendations
Conference vision
Improving children’s health and health services through timely provision of
accurate and comprehensive information
My conference observations
• Integrated child health information systems are not effective until the information is used to improve health and health services
• There are many efforts to develop clinical or public health child health information systems
• Little attention is being paid to integrating the information from those systems
• Deliberate efforts toward integration must continue
Conference recommendations
• A series of action steps in four areas– Governance– Information infrastructure– Economic issues– Use of information
• Meeting summary and recommendations posted at
www.allkidscount.org
Common threads in recommendations
• Development of national coalition of stakeholders to promote integration of separate CHIS within the context of ongoing initiatives such as NHII and PHIN
• Need to develop business and policy cases for integrated CHIS
• Need to develop agreement on standards for collecting and transferring information
• Need to get the word out about importance of integrating separate CHIS to improve health and health services
What’s needed to move ahead• A shared vision and plan of action• Agreement on core functions—common
definition for integrated system • Definition and pilot testing of performance
indicators to measure progress and outcomes• Documentation and dissemination of best
practices (to prevent “reinventing the wheel”)• Studies that provide data on costs, cost savings
and changes in outcomes• Education/advocacy of stakeholders in public
and private sectors
My recommendations
• Learn from each other• Learn from other programs – e.g.,
immunization registries, NDBS screening• Develop standards that are compatible with
other child health information systems• Develop information systems designed to
– Meet both clinical and public health needs– Share information with other systems
Contact information
ahinman@taskforce.org
www.allkidscount.org
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