Why Do We Need Integrated Child Health Information Systems

1
Why Do We Need Integrated Child Health
Information Systems?

• Alan R. Hinman, MD, MPH
• All Kids Count
• February 29, 2004

2
PHII basic premise

• Health and health services can be improved by
  assuring timely provision of accurate information
• Currently, information is often not timely and
  usually fragmented

3
Is there an information problem?

• Look at experience with newborn dried blood spot
  screening and newborn hearing screening

4
Newborns screened for hyperphenylalaninemia
1999-1

• No. screened 4,024,850
• No. NOT NORMAL 3,494
• No. NOT NORMAL lost to f-u 154
• No. Classical PKU or
• clinically significant variant 302

5
Newborns screened for hyperphenylalaninemia
1999-2

• 3,494 NOT NORMAL 154 lost to f-u
• 3,340 NOT NORMAL with f-u -gt
• 302 classical PKU or sig. Variant
• 3,340/302 11 f-u/case
• 154 NOT NORMAL lost to f-u/11
• 14 missed cases??

6
Days from birth to initiation of Rx - Classical
PKU

• Days No.
• 0 - 7 38
• 8 - 14 87
• 15 21 30
• gt21 14
• Unknown 18
• NR 12
• Source NNSR - 1999

7
Newborns screened for hypothyroidism 1999 - 1

• No. screened 4,024,850
• No. NOT NORMAL 52,217
• No. NOT NORMAL lost to f-u 1,371
• No. confirmed
• 1o hypothyroidism 1,550

8
Newborns screened for hypothyroidism 1999 - 2

• 52,217 NOT NORMAL1,371 lost to f-u
• 50,846 NOT NORMAL with f-u -gt
• 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??

9
Days from birth to initiation of Rx - 1o
hypothyroidism

• Days No.
• 0 - 7 218
• 8 14 455
• 15 21 143
• gt21 225
• Unknown 492

10
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

11
Average time for notification of initial
screen-positive result Desposito et al

• Days
• 1 - 3 12.5
• 4 - 7 33.1
• 8 10 16.2
• 11 14 14.5
• 15 21 9.4
• gt 22 4.4
• Not 4.5
• ? 5.4

12
Average time for notification of screen-negative
result Desposito et al

• Days
• 1 - 7 4
• 8 14 19
• 15 - 21 22
• 22 28 13
• gt28 16
• Not 26

13
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.

14
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 2001108e22

15
Putting newborns at risk

• the science of screening moves faster than the
  bureaucracy that manages it. A recent state
  audit found Georgia cant 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

16
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 2000106e7

17
Can information systems improve health and health
care?

• Look at experience with immunization registries

18
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

19
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

20
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

21
Impact of immunization registryin an HMO - 2

• 4-3-1-1 4-3-1-1-2
• 1996 1997 1996 1997
• Staff 88.2 95.7 60.6 87.8
• Affiliates 85.1 83.9 70.2 73.7

22
Registry use inSan Bernardino County

• 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.

23
Current Immunization Profile for 19-35 Month Old
Children by County for 43133, Based on MCIR
Data
24
MCIR 43133 Immunization Rates by MI Region
Region 5 Region 6 Region 2 Region 4 Region
3 State Region 1
? ? ?
? ?
? Jan 01 Jul 01 Jan 02
Jul 02 Jan 03 Jul 03
25
Why do we need integrated CHIS?

• Many children do not receive all preventive or
  therapeutic services in a timely manner
• Several studies have found low immunization
  coverage rates to be correlated with insufficient
  screening for lead and anemia
• Multiple PH programs focus on the same target
  population w/o coordination of services
  outreach
• There is a need for population-based information
  that can better identify at-risk children and
  target programs and services to their needs

26
Linkage Integration - 1

• ?linkage - modifying existing information systems
  to exchange information
• ?integration - comprehensive systems built with,
  perhaps, individual components

27
Linkage Integration - 2

• Integration - providing a range of information to
  the 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

28
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