Download Craig Mason

Lost to Follow Up Challenges:
Data and Systems for Tracking
and Surveillance
Acknowledgements
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Anne Jarrett
Sherry Spence
Roy Ing
National Goals Subcommittees and Chairs
All members of the data committee, past
and present…
Why Databases and Data Linkage
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Tracking
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Complete care
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Up front costs in time and money can be
considerable but ultimate efficiencies pay off
Can assist in reducing loss-to-follow-up
Connections across areas
Answers to questions
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Where are there insufficient audiologists by
what amount
Why Databases and Data Linkage
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Less likely to miss individuals
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Linkage facilitates quality-control evaluations
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Probabilistic linking impossible
Straightforward follow-up ensures children in prior
system appropriately appear in subsequent systems
More complicated: Which children in which later system
did not appear in which earlier system?
Capture-Recapture would require linkage or electronic
format
Easier to generate de-identified, yet useful data
Comprehensive Item List
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A comprehensive list of 450+ possible items
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Minimum data item--data item recommended for all
state data systems; the set of data items that are
required for follow-up on universal newborn hearing
screening and for full reporting on national EHDI goals.
Core data item--data item recommended for complete
state-level data system, including basic data needed for
program evaluation.
Enhanced data item--additional data item useful for
clinicians, enhanced tracking, or research.
Recent Activities
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Focus on items required for National Goals
and Objectives
Comprehensive Item List as a framework
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Narrow down to items specifically required to
address National Goals and Objectives
Include items useful for linkage
Include a small set of additional key fields
Data Committee Activities
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Goals and Objectives Sub-Committees
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Subcommittees examined each Goal
It was felt that some goals were not relevant
for tracking and surveillance system
“1.5 Financial barriers. Each state will develop
a system to reduce/eliminate financial barriers
to newborn hearing screening.”
Lead to Content of Goals and Objectives
Chart
Contents of Goals and Objectives
Last Updated 2/20/2005
Data items needed for a
tracking and surveillance system
Infant
Goal 1
Screening
Goal 2
Outcome
Goal 3
EI
Goal 4
Acquired,
Late Onset
Goal 5
Medical
Home
Goal 6
Tracking
Goal 7
Program
Evaluation
1.1.a,d
1.3.a
1.4
Data Event
Parent Site
1.1.e
1.3.b,
c
1.1
Referral
Data items NOT needed for tracking and surveillance system
Information
Parent
Site
Collab.
1.7.a
2.1.a-e
2.4
3.1
3.2.a,d,e
3.3.d
3.9.b
3.9.d
3.1
3.10
Information
Procedures
Dissemination
Guidelines
Event Results Resources
1.1.b
1.5
1.6
1.2
1.6
1.5
1.9
2.2
2.7
2.3
2.7
3.2.b
3.3.a
3.3.b
3.4
3.3.c
3.5
3.4
3.8
3.6
3.9.a
3.9.c
Training Deleted
1.1.c
1.7.b
1.8
2.5
2.6
2.1.f,g
3.7
3.2.c
5.4.c
5.6
4.1
4.2
4.3
5.2
5.1.a,b
6.4
6.6
6.8
7.4.b,c,e
5.5.b
6.7
5.4.a,b
6.8
5.3
6.5
7.3
7.1
7.2
6.9
5.5.a
6.1
6.2
6.3
6.9
7.4.a
7.4.d
Contents of Goals and Objectives
Last Updated 2/20/2005
Data items needed for a
tracking and surveillance system
Infant
Goal 1
Screening
Goal 2
Outcome
Goal 3
EI
Goal 4
Acquired,
Late Onset
Goal 5
Medical
Home
Goal 6
Tracking
Goal 7
Program
Evaluation
1.1.a,d
1.3.a
1.4
Data Event
Parent Site
1.1.e
1.3.b,
c
1.1
Referral
Data items NOT needed for tracking and surveillance system
Information
Parent
Site
Collab.
1.7.a
2.1.a-e
2.4
3.1
3.2.a,d,e
3.3.d
3.9.b
3.9.d
3.1
3.10
Information
Procedures
Dissemination
Guidelines
Event Results Resources
1.1.b
1.5
1.6
1.2
1.6
1.5
1.9
2.2
2.7
2.3
2.7
3.2.b
3.3.a
3.3.b
3.4
3.3.c
3.5
3.4
3.8
3.6
3.9.a
3.9.c
Training Deleted
1.1.c
1.7.b
1.8
2.5
2.6
2.1.f,g
3.7
3.2.c
5.4.c
5.6
4.1
4.2
4.3
5.2
5.1.a,b
6.4
6.6
6.8
7.4.b,c,e
5.5.b
6.7
5.4.a,b
6.8
5.3
6.5
7.3
7.1
7.2
6.9
5.5.a
6.1
6.2
6.3
6.9
7.4.a
7.4.d
Data Committee Activities
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Subcommittees examined each Goal
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Identify potential relevant data items
Identify measurement/reliability issues
Highlight changes and recommended additions
to the wording of the objectives and
performance indicators from the original
National Goals
For example…
Data Committee Activities
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3.1.a. Number and percent of infants with
hearing loss who received appropriate
medical services before 6 months of age
from primary care, otolaryngologists,
ophthalmologists, and geneticists/genetic
counselors.
Data Committee Activities
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3.1.a. Number and percent of infants with
hearing loss who received appropriate
medical services before 6 months of age
from each of the following: (1) a primary
care provider, (2) an otolaryngologist, (3)
an ophthalmologist, and when appropriate,
(4) a geneticists/genetic counselors.
3.1.b. …..from ALL of the following….
Data Committee Activities
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Additional general decisions
Identify fields may prove useful for linkage
Risk Factors
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Not address specific risk factors at this time
Continue to monitor and expand capability for
future
Revisit in future with recommendations
regarding specific factors and monitoring time
frame
Recent Activities
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Final List of Items
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79+ total recommended items
23 address overall goals
28 address specific objectives and performance
measures
24 are recommended (as needed) examples of
possible linkage fields
4+ are other relevant data items
Data Committee Activities
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Result in two documents
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Revised National Goals and Objectives
Document
Minimum Data Items Document
Revised National Goals and
Objectives Document
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Organize Goals, Objectives, and
Performance Indicators
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Include recommended changes in wording
Identify which are recommended as being
addressed in tracking and surveillance system
Identify necessary data items
Include notes and comments regarding
recommendations
3.1 Medical services. All infants identified with hearing loss
will receive appropriate medical services, such as primary
care, visual screening, genetic services, and counseling
before 6 months of age.
126 Child (Unique identifier)
206 Child Date of Birth
84 Provider Speciality
413 Genetic Information, Counseling,
Referral
a. Number and percent of infants with hearing loss who
344 R Ear Diag Hearing Loss?
received appropriate medical services before 6 months of 363 L Ear Diag Hearing Loss?
age from primary care, otolaryngologists,
345 R Ear Diag Degree of Hearing Loss
ophthalmologists, and geneticists/genetic counselors.
364 L Ear Diag Degree of Hearing Loss
346 R Ear Diag Type of Hearing Loss
a. Number and percent of infants with hearing loss who
365 L Ear Diag Type of Hearing Loss
received appropriate medical services before 6 months of 394 Intervention service start date
age from each of the following: (1) a primary care provider, 405 Type of service
(2) an otolaryngologist, (3) an ophthalmologist, and when 407 Date of Evaluation or Intervention
appropriate, (4) a geneticists/genetic counselors.
??? Risk Factor Monitoring Child
??? Genetic Evaluation Appropriate
a. Number and percent of infants with hearing loss who
received appropriate medical services before 6 months of
age from ALL of the following: (1) a primary care provider,
(2) an otolaryngologist, (3) an ophthalmologist, and when
appropriate, (4) a geneticists/genetic counselors.
The committee recommended
separating 3.1.a into two
perfornamce indicators, one
assessing each specialty alone, the
other assessing whether a child
received a "totality" of care. It was
also felt that two additional items
would help to address and
evaluate this (and Goal 4).
Use a single "Type of Service data
field, similar to the "Referral" field
previously noted. Include
Otolaryngology, PCP
3.1 Medical services. All infants identified with hearing loss
will receive appropriate medical services, such as primary
care, visual screening, genetic services, and counseling
before 6 months of age.
126 Child (Unique identifier)
206 Child Date of Birth
84 Provider Speciality
413 Genetic Information, Counseling,
Referral
a. Number and percent of infants with hearing loss who
344 R Ear Diag Hearing Loss?
received appropriate medical services before 6 months of 363 L Ear Diag Hearing Loss?
age from primary care, otolaryngologists,
345 R Ear Diag Degree of Hearing Loss
ophthalmologists, and geneticists/genetic counselors.
364 L Ear Diag Degree of Hearing Loss
346 R Ear Diag Type of Hearing Loss
a. Number and percent of infants with hearing loss who
365 L Ear Diag Type of Hearing Loss
received appropriate medical services before 6 months of 394 Intervention service start date
age from each of the following: (1) a primary care provider, 405 Type of service
(2) an otolaryngologist, (3) an ophthalmologist, and when 407 Date of Evaluation or Intervention
appropriate, (4) a geneticists/genetic counselors.
??? Risk Factor Monitoring Child
??? Genetic Evaluation Appropriate
a. Number and percent of infants with hearing loss who
received appropriate medical services before 6 months of
age from ALL of the following: (1) a primary care provider,
(2) an otolaryngologist, (3) an ophthalmologist, and when
appropriate, (4) a geneticists/genetic counselors.
The committee recommended
separating 3.1.a into two
perfornamce indicators, one
assessing each specialty alone, the
other assessing whether a child
received a "totality" of care. It was
also felt that two additional items
would help to address and
evaluate this (and Goal 4).
Use a single "Type of Service data
field, similar to the "Referral" field
previously noted. Include
Otolaryngology, PCP
3.1 Medical services. All infants identified with hearing loss
will receive appropriate medical services, such as primary
care, visual screening, genetic services, and counseling
before 6 months of age.
126 Child (Unique identifier)
206 Child Date of Birth
84 Provider Speciality
413 Genetic Information, Counseling,
Referral
a. Number and percent of infants with hearing loss who
344 R Ear Diag Hearing Loss?
received appropriate medical services before 6 months of 363 L Ear Diag Hearing Loss?
age from primary care, otolaryngologists,
345 R Ear Diag Degree of Hearing Loss
ophthalmologists, and geneticists/genetic counselors.
364 L Ear Diag Degree of Hearing Loss
346 R Ear Diag Type of Hearing Loss
a. Number and percent of infants with hearing loss who
365 L Ear Diag Type of Hearing Loss
received appropriate medical services before 6 months of 394 Intervention service start date
age from each of the following: (1) a primary care provider, 405 Type of service
(2) an otolaryngologist, (3) an ophthalmologist, and when 407 Date of Evaluation or Intervention
appropriate, (4) a geneticists/genetic counselors.
??? Risk Factor Monitoring Child
??? Genetic Evaluation Appropriate
a. Number and percent of infants with hearing loss who
received appropriate medical services before 6 months of
age from ALL of the following: (1) a primary care provider,
(2) an otolaryngologist, (3) an ophthalmologist, and when
appropriate, (4) a geneticists/genetic counselors.
The committee recommended
separating 3.1.a into two
perfornamce indicators, one
assessing each specialty alone, the
other assessing whether a child
received a "totality" of care. It was
also felt that two additional items
would help to address and
evaluate this (and Goal 4).
Use a single "Type of Service data
field, similar to the "Referral" field
previously noted. Include
Otolaryngology, PCP
3.1 Medical services. All infants identified with hearing loss
will receive appropriate medical services, such as primary
care, visual screening, genetic services, and counseling
before 6 months of age.
126 Child (Unique identifier)
206 Child Date of Birth
84 Provider Speciality
413 Genetic Information, Counseling,
Referral
a. Number and percent of infants with hearing loss who
344 R Ear Diag Hearing Loss?
received appropriate medical services before 6 months of 363 L Ear Diag Hearing Loss?
age from primary care, otolaryngologists,
345 R Ear Diag Degree of Hearing Loss
ophthalmologists, and geneticists/genetic counselors.
364 L Ear Diag Degree of Hearing Loss
346 R Ear Diag Type of Hearing Loss
a. Number and percent of infants with hearing loss who
365 L Ear Diag Type of Hearing Loss
received appropriate medical services before 6 months of 394 Intervention service start date
age from each of the following: (1) a primary care provider, 405 Type of service
(2) an otolaryngologist, (3) an ophthalmologist, and when 407 Date of Evaluation or Intervention
appropriate, (4) a geneticists/genetic counselors.
??? Risk Factor Monitoring Child
??? Genetic Evaluation Appropriate
a. Number and percent of infants with hearing loss who
received appropriate medical services before 6 months of
age from ALL of the following: (1) a primary care provider,
(2) an otolaryngologist, (3) an ophthalmologist, and when
appropriate, (4) a geneticists/genetic counselors.
The committee recommended
separating 3.1.a into two
perfornamce indicators, one
assessing each specialty alone, the
other assessing whether a child
received a "totality" of care. It was
also felt that two additional items
would help to address and
evaluate this (and Goal 4).
Use a single "Type of Service data
field, similar to the "Referral" field
previously noted. Include
Otolaryngology, PCP
3.1 Medical services. All infants identified with hearing loss
will receive appropriate medical services, such as primary
care, visual screening, genetic services, and counseling
before 6 months of age.
126 Child (Unique identifier)
206 Child Date of Birth
84 Provider Speciality
413 Genetic Information, Counseling,
Referral
a. Number and percent of infants with hearing loss who
344 R Ear Diag Hearing Loss?
received appropriate medical services before 6 months of 363 L Ear Diag Hearing Loss?
age from primary care, otolaryngologists,
345 R Ear Diag Degree of Hearing Loss
ophthalmologists, and geneticists/genetic counselors.
364 L Ear Diag Degree of Hearing Loss
346 R Ear Diag Type of Hearing Loss
a. Number and percent of infants with hearing loss who
365 L Ear Diag Type of Hearing Loss
received appropriate medical services before 6 months of 394 Intervention service start date
age from each of the following: (1) a primary care provider, 405 Type of service
(2) an otolaryngologist, (3) an ophthalmologist, and when 407 Date of Evaluation or Intervention
appropriate, (4) a geneticists/genetic counselors.
??? Risk Factor Monitoring Child
??? Genetic Evaluation Appropriate
a. Number and percent of infants with hearing loss who
received appropriate medical services before 6 months of
age from ALL of the following: (1) a primary care provider,
(2) an otolaryngologist, (3) an ophthalmologist, and when
appropriate, (4) a geneticists/genetic counselors.
The committee recommended
separating 3.1.a into two
perfornamce indicators, one
assessing each specialty alone, the
other assessing whether a child
received a "totality" of care. It was
also felt that two additional items
would help to address and
evaluate this (and Goal 4).
Use a single "Type of Service data
field, similar to the "Referral" field
previously noted. Include
Otolaryngology, PCP
Minimum Data Items
Document
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Organize Data Items
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Identify Goals, Objectives, Performance
Indicators requiring an item
Identify general-level of source for an item
Identify data item classification
Include notes and comments regarding
recommendations
Data Committee Activities
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Categories
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Common minimal groupings across programs
Allow programs to compare groups or
activities in a meaningful way
Minimal groupings
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Hawaii may want to differentiate among various
“Native Hawaiian or Other Pacific Islander” groups
Vermont may not
Some adopted from existing bodies—ethnicity
Others need to be created—provider specialty
Data Committee Activities
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Formulas
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The numbers programs report mean the same
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Or at least if they don’t, we know it and can
articulate and stipulate the difference
EUROCAT (EUROCAT Working Group, 1997)
Issues
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Some will look “better” others “worse”
Specify reporting for national EHDI numbers
Multiple ways of reporting for different uses
Future Activities
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Revisit Risk Factors
Language/Cognitive/Social Skill Assessment
FERPA and long-term outcome data
Border-Babies and progressive loss-tofollow-up due to migration
Strategies for getting from here to there
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These are goals to work towards