Lost to Follow Up Challenges: Data and Systems for Tracking and Surveillance
Acknowledgements 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
Tracking Up front costs in time and money can be
considerable but ultimate efficiencies pay off
Can assist in reducing loss-to-follow-up Complete care
Connections across areas Answers to questions
Where are there insufficient audiologists by what amount
Why Databases and Data Linkage
Less likely to miss individuals 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? Linkage facilitates quality-control evaluations
Capture-Recapture would require linkage or electronic format
Easier to generate de-identified, yet useful data
Comprehensive Item List A comprehensive list of 450+ possible items
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 Focus on items required for National
Goals and Objectives Comprehensive Item List as a
framework 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
Goals and Objectives Sub-Committees 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
Last Updated 2/20/2005
Collab.Procedures Guidelines Training Deleted
Infant Parent Site Referral Parent Site Event Results Resources
Goal 1Screening
1.1.a,d1.3.a1.4
1.1.e1.3.b,
c 1.1 1.7.a 1.2 1.6 1.5
1.1.b1.51.61.9 1.8
1.1.c1.7.b
Goal 2Outcome 2.1.a-e 2.4 2.7 2.3
2.22.7
2.52.6 2.1.f,g
Goal 3 EI
3.13.2.a,d,e
3.3.d3.9.b 3.9.d
3.13.10
3.3.a3.43.53.8
3.9.a
3.2.b3.3.b3.3.c3.43.6
3.9.c 3.7 3.2.c
Goal 4Acquired, Late Onset
4.14.24.3
Goal 5Medical Home 5.1.a,b 5.5.b 5.4.a,b
5.25.3 5.5.a 5.4.c 5.6
Goal 6Tracking
6.46.66.8 6.7 6.8 6.5 6.9
6.16.26.36.9
Goal 7Program Evaluation 7.4.b,c,e 7.3
7.17.2
7.4.a7.4.d
Contents of Goals and Objectives
Information DisseminationInformation
Data items needed for a tracking and surveillance system Data items NOT needed for tracking and surveillance system
Data Event
Last Updated 2/20/2005
Collab.Procedures Guidelines Training Deleted
Infant Parent Site Referral Parent Site Event Results Resources
Goal 1Screening
1.1.a,d1.3.a1.4
1.1.e1.3.b,
c 1.1 1.7.a 1.2 1.6 1.5
1.1.b1.51.61.9 1.8
1.1.c1.7.b
Goal 2Outcome 2.1.a-e 2.4 2.7 2.3
2.22.7
2.52.6 2.1.f,g
Goal 3 EI
3.13.2.a,d,e
3.3.d3.9.b 3.9.d
3.13.10
3.3.a3.43.53.8
3.9.a
3.2.b3.3.b3.3.c3.43.6
3.9.c 3.7 3.2.c
Goal 4Acquired, Late Onset
4.14.24.3
Goal 5Medical Home 5.1.a,b 5.5.b 5.4.a,b
5.25.3 5.5.a 5.4.c 5.6
Goal 6Tracking
6.46.66.8 6.7 6.8 6.5 6.9
6.16.26.36.9
Goal 7Program Evaluation 7.4.b,c,e 7.3
7.17.2
7.4.a7.4.d
Contents of Goals and Objectives
Information DisseminationInformation
Data items needed for a tracking and surveillance system Data items NOT needed for tracking and surveillance system
Data Event
Data Committee Activities
Subcommittees examined each Goal 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
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
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
Additional general decisions Identify fields may prove useful for
linkage Risk Factors
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 Final List of Items
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
Result in two documents Revised National Goals and Objectives
Document Minimum Data Items Document
Revised National Goals and Objectives Document
Organize Goals, Objectives, and Performance Indicators 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.
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.
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.
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.
126 Child (Unique identifier)206 Child Date of Birth84 Provider Speciality413 Genetic Information, Counseling, Referral 344 R Ear Diag Hearing Loss?363 L Ear Diag Hearing Loss?345 R Ear Diag Degree of Hearing Loss 364 L Ear Diag Degree of Hearing Loss 346 R Ear Diag Type of Hearing Loss 365 L Ear Diag Type of Hearing Loss 394 Intervention service start date405 Type of service407 Date of Evaluation or Intervention??? Risk Factor Monitoring Child??? Genetic Evaluation Appropriate
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.
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.
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.
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.
126 Child (Unique identifier)206 Child Date of Birth84 Provider Speciality413 Genetic Information, Counseling, Referral 344 R Ear Diag Hearing Loss?363 L Ear Diag Hearing Loss?345 R Ear Diag Degree of Hearing Loss 364 L Ear Diag Degree of Hearing Loss 346 R Ear Diag Type of Hearing Loss 365 L Ear Diag Type of Hearing Loss 394 Intervention service start date405 Type of service407 Date of Evaluation or Intervention??? Risk Factor Monitoring Child??? Genetic Evaluation Appropriate
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.
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.
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.
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.
126 Child (Unique identifier)206 Child Date of Birth84 Provider Speciality413 Genetic Information, Counseling, Referral 344 R Ear Diag Hearing Loss?363 L Ear Diag Hearing Loss?345 R Ear Diag Degree of Hearing Loss 364 L Ear Diag Degree of Hearing Loss 346 R Ear Diag Type of Hearing Loss 365 L Ear Diag Type of Hearing Loss 394 Intervention service start date405 Type of service407 Date of Evaluation or Intervention??? Risk Factor Monitoring Child??? Genetic Evaluation Appropriate
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.
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.
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.
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.
126 Child (Unique identifier)206 Child Date of Birth84 Provider Speciality413 Genetic Information, Counseling, Referral 344 R Ear Diag Hearing Loss?363 L Ear Diag Hearing Loss?345 R Ear Diag Degree of Hearing Loss 364 L Ear Diag Degree of Hearing Loss 346 R Ear Diag Type of Hearing Loss 365 L Ear Diag Type of Hearing Loss 394 Intervention service start date405 Type of service407 Date of Evaluation or Intervention??? Risk Factor Monitoring Child??? Genetic Evaluation Appropriate
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.
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.
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.
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.
126 Child (Unique identifier)206 Child Date of Birth84 Provider Speciality413 Genetic Information, Counseling, Referral 344 R Ear Diag Hearing Loss?363 L Ear Diag Hearing Loss?345 R Ear Diag Degree of Hearing Loss 364 L Ear Diag Degree of Hearing Loss 346 R Ear Diag Type of Hearing Loss 365 L Ear Diag Type of Hearing Loss 394 Intervention service start date405 Type of service407 Date of Evaluation or Intervention??? Risk Factor Monitoring Child??? Genetic Evaluation Appropriate
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
Organize Data Items 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 Categories
Common minimal groupings across programs Allow programs to compare groups or
activities in a meaningful way Minimal groupings
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 Formulas
The numbers programs report mean the same
Or at least if they don’t, we know it and can articulate and stipulate the difference
EUROCAT (EUROCAT Working Group, 1997) Issues
Some will look “better” others “worse” Specify reporting for national EHDI numbers Multiple ways of reporting for different uses
Future Activities Revisit Risk Factors Language/Cognitive/Social Skill
Assessment FERPA and long-term outcome data Border-Babies and progressive loss-to-
follow-up due to migration Strategies for getting from here to there
These are goals to work towards