lost to follow up challenges: data and systems for tracking and surveillance

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

3.2.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

3.2.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

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…

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.

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….

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

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

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

lost to follow up challenges: data and systems for tracking and surveillance

Documents