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

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Baraga

Marquette

Dickinson

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Menominee

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Luce

Mackinac

Chippewa

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Presque Isle

Charlevoi x

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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