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Data Collection Guidelines

Vision and Eye Health in Children 36 to < 72 Months: Proposed Data System 

Recommendations for developing an integrated data system for recording vision screening and eye care follow-up outcomes in preschool-aged children. Guidance is provided regarding specific elements to be included, as well as the characteristics and architecture of such a data system.

Vision screening for preschool-aged children is endorsed by many organizations concerned with children’s health issues. Currently, there is a lack of data on the proportion of children screened and no effective system to ensure that children who fail screenings access appropriate comprehensive eye examinations and follow-up care. Following are recommendations for developing an integrated data system for recording vision screening and eye care follow-up outcomes in preschool-aged children. The recommendations were developed by the National Expert Panel to the National Center for Children’s Vision and Eye Health at Prevent Blindness and funded by the Maternal and Child Health Bureau of the Health Resources and Services Administration, U.S. Department of Health and Human Services. Guidance is provided regarding specific elements to be included, as well as the characteristics and architecture of such a data system.

The panel recommends that efforts to integrate vision care data with other child health data should build on existing state-level approaches to data integration following national guidelines for uniform data collection. A targeted protocol would include expansion of the statewide immunization information systems to incorporate information on vision screenings and eye care. These systems already have the appropriate security measures to safeguard privacy of information. This approach would allow monitoring of vision care services provided by different types of health care professionals, including tracking of receipt of follow-up care and outcome measures. While ophthalmology and optometry currently do not utilize these systems, it is recommended that they be allowed to review existing data and to add limited clinical results and treatment recommendations from their comprehensive eye examinations.

This webpage provides a synopsis of the article content. Read the complete journal article.

Characteristics of an Effective Vision Health Data System

Recommendation Summary

  • User friendly data entry and report generation
  • Monitored for effectiveness and content security
  • Data entry accepted from educational, community, public health, primary health care, and eye care settings
  • Data entry is systematic and standardized
  • Use of child-specific identifiers

Recommendation Summary

  • Compliant with Health Insurance Portability and Accountability Act (HIPAA) and Family Educational Rights and Privacy Act (FERPA) standards.
  • Screening data input accepted from public health, educational, and primary health care settings.
  • Access to vision screening data given to licensed eye care providers (optometrists and ophthalmologists) and the ability to enter outcomes of comprehensive eye exams with needed follow-up services.
  • The data system design should enhance the interchange of information concerning specific children among ophthalmologists, optometrists, primary care providers, and community programs, any of whom would be able to inspect the successful completion of vision screening, screening referral, and limited follow-up plan for an individual child.
  • Families should be able to access the system to review medical information contained within the system, albeit without the ability to modify any data.
  • The system should have a standard method of delivering vision screening results and a referral plan to the parents or guardian of the child screened.

Recommendation Summary

  • Specific demographic elements must be integrated into the data system to ensure that vision screening data entered is linked to the correct child with the goal of reducing duplication of services and improving coordination of care.
  • Demographic data items should follow the functional standards set by the US Centers for Disease Control and Prevention. Most of the demographic data points already exist in state integrated health systems or electronic health records. The following table outlines these data items:

Table 1: Data Items for Unique Identification of Each Child (12)

Patient ID (previously listed as “Medicaid Number”)
Patient ID: Assigning Authority ID (i.e., owning source)
Patient ID: Type (e.g., medical record number, IIS ID)
Patient Name: First
Patient Name: Middle
Patient Name: Last
Patient Alias Name: First
Patient Alias Name: Middle
Patient Alias Name: Last
Patient Date of Birth
Patient Gender
Patient Multiple Birth Indicator
Patient Birth Order
Responsible Person Name: First
Responsible Person Name: Middle
Responsible Person Name: Last
Responsible Person Name: Relationship to Patient
Mother’s Name: First
Mother’s Name: Middle
Mother’s Name: Last
Mother’s Name: Maiden Last
Patient Address: Street
Patient Address: City
Patient Address: State
Patient Address: Country
Patient Address: Zip code
Patient Address: County of Residence
Birthing Facility Name
Patient Birth State
Patient Primary Language
Patient Telephone Number
Patient Telephone Number Type (e.g., home, cell)
Patient E-mail Address

Specific Vision Care Data Elements

The National Expert Panel identified three separate types of vision health data that should be integrated into the health data system:

  1. Vision Screening Process Data
  2. NOT Screened Data
  3. Screening Outcome Data

1. Vision Screening Process

The “Vision Screening Process” column lists data that will verify that a valid vision screening process has been completed.

  • Unique Identifiers
  • Date of screening
  • Site of screening (e.g., medical, community, educational, child care/Head Start)
  • Specific location of screening (e.g. name of school or clinic)
  • Zip code of screening location
  • ob title of screener (physician, nurse, volunteer, eye care provider)
  • Provider’s ID Code (if appropriate)
  • Visual acuity test used (selected from accepted list in Cotter, et al,)13
  • Testing Distance
  • Stereopsis
  • Instrument based photoscreening:  Device used

2. NOT Screened

The “NOT Screened” column details fields that should be reported when a vision screening is not completed



  • known neurodevelopmental disorder
  • systemic diseases requiring eye surveillance
  • medication side effect profile
  • prematurity <32 weeks gestation


  • recognized eye abnormality
  • relevant family history
  • parental request
  • prior eye examination requiring follow up

–no consent from parent(s) available

3. Screening Outcome

The “Screening Outcome” column details data fields which should be captured following a completed screening. 

–PASS:  completed screening; No follow up needed

–REFER*:  completed screening


–LIKELY to complete screening later:  RESCREEN as soon as possible, at least within 6 months

–UNLIKELY to complete screening later:  REFER*

* Any referral must be validated by date of appointment and name of optometrist or ophthalmologist providing initial eye exam.

Additional Data Collection Recommendations for Vision Screening

  • Individual states may choose to collect additional data points that can allow for increased surveillance of screening program quality.
  • The system should have a mechanism to provide feedback to the educational-, community-, or public health-based vision screening programs that the primary care provider or medical home has accessed the information from the vision screening.
  • The integrated vision data system should contain a component that summarizes the outcome and treatment recommendations from a comprehensive eye exam. The minimal information that should be entered would allow the effectiveness of the screening program to be evaluated in regard to the accuracy of children who fail the screening and follow up with a comprehensive eye examination.

Data From Eye Care Provider


Date of Eye Examination
Provider’s ID Code
Visual Acuity OD:
Visual Acuity OS

Were any of the following diagnoses determined:

Yes / No amblyopia
Yes/ No strabismus
Yes / No other diagnosis
If “Other”, please define:

Were glasses prescribed? Yes / No

If yes, please indicate:
Refractive Error: OD
Refractive Error: OS
Correction Prescribed OD:
Correction Prescribed OS:
Time to next follow-up in months

Was an additional referral to another specialist required? Yes / No

If yes, what kind of specialist?


Date of follow-up eye examination
Provider’s ID Code
If glasses were prescribed at initial visit, did the child obtain them Yes / No
If previously diagnosed with amblyopia, is this diagnosis confirmed? Yes / No

Recommendation Summary

  • Mechanisms for incentives and funding need to be in place to ensure that data are entered within a specified time frame after screening, that data are entered consistently and completely, and that a quality assurance system is devised to verify data.
  • Developing an integrated child health information database will require state and/or federal funding.
  • “Meaningful use”  10 standards should be applied to the development of this data system.
  • Vision screening programs should be able to obtain reports from the system to demonstrate the effectiveness of their programs.
  • Special considerations should be taken to monitor homeless, undocumented or transient children, as well as children who reside in non-traditional family settings, such as foster care.
  • Appropriate eye care services need to be accessible for children who lack adequate insurance (16).
  • It should be possible to analyze data by sub-populations (e.g., uninsured, specific minorities), which will provide evidence regarding health disparity issues and facilitate the development of programs to decrease such disparities.

Hartmann EE, Block SS, Wallace DK for the National Expert Panel to the National Center for Children’s Vision and Eye Health. Vision Screening for Children 36 to <72 Months: Proposed Data System. Optom Vis Sci 2015;92(1): 24-30.

Corresponding Author

E. Eugenie Hartmann, PhD
University of Alabama at Birmingham
Department of Vision Sciences
618 Worrell Building
924 18th Street South
Birmingham, AL 35233
[email protected]

References for Vision Screening for Children 36 to <72 Months:
Proposed Data System

1. United States Preventive Services Task Force. Vision screening for children 1 to 5 years of age: US Preventive Services Task Force Recommendation Statement. Pediatrics 2011;127:340-346.
2. Wall TC, Marsh-Tootle W, Evans HH, Fargason CA, Ashworth CS, Hardin JM. Compliance with vision-screening guidelines among a national sample of pediatricians. Ambul Pediatr 2002;2:449-455.
3. Kemper AR, Wallace DK, Patel N, Crews JE. Preschool vision testing by health providers in the United States: findings from the 2006-2007 Medical Expenditure Panel Survey. J AAPOS 2011;15:480-483.
4. Marsh-Tootle WL, Wall TC, Tootle JS, Person SD, Kristofco RE. Quantitative pediatric vision screening in primary care settings in Alabama. Optom Vis Sci 2008;85:849-856.
5. United States Department of Health and Human Services. Healthy People 2020. Objective V HP2020-1. Washington, DC; 2010.
6. Hartmann EE, Bradford GE, Chaplin PK, et al. Project Universal Preschool Vision Screening: a demonstration project. Pediatrics 2006;117:e226-237.
7. Thorpe, JH, Rosenbaum S. Understanding the Interaction Between EPSDT and Federal Health Information Privacy and Confidentiality Laws. Health Information and the Law; 2013. http://www.healthinfolaw.org/article/understanding-interaction-between-epsdt-and-federal-health-information-privacy-and-confide-0. Last accessed February 9, 2014.
8. United States Department of Health and Human Services, Centers for Disease Control and Prevention. EXCITE- Glossary of Epidemiology Terms. . Atlanta; 2006.
9. Committee on Engineering and the Health Care System. Building a Better Delivery System: A New Engineering/Health Care Partnership In: Press TNA (ed). Washington, DC: Institute of Medicine and National Academy of Engineering; 2005.
10. Meaningful Use Definition & Objectives http://www.healthit.gov/providers-professionals/meaningful-use-definitio…. Last accessed February 9, 2014.
11. Ohio Department of Health. Statewide Immunization Information System: Ohio Impact SIIS. Columbus; 2011.
12. United States Department of Health and Human Services, Centers for Disease Control and Prevention. Immunization Information System Recommended Core Data Elements Atlanta; 2007. http://www.cdc.gov/vaccines/programs/iis/func-stds.html#appB (Accessed on May 28, 2014)
13. Susan A. Cotter, SA, Cyert, LA, Miller, JM, Quinn, GE. Recommended Practices for Vision Screening Children Aged 36 to <72 Months. Optom Vis Sci; January 2015 [ePub ahead of print].
14. Marsh-Tootle WL, Russ SA, Repka MX. Recommendations for preschool-aged children’s vision performance measures. Optom Vis Sci January 2015 [ePub ahead of print].
15. Sanders DS, Lattin DJ, Read-Brown S, et al. Electronic health record systems in ophthalmology: impact on clinical documentation. Ophthalmology 2013;120:1745-1755.
16. Williams S, Wajda BN, Alvi R, McCauley C, Martinez-Helfman S, Levin AV. The challenges to ophthalmologic follow-up care in at-risk pediatric populations. J AAPOS 2013;17:140-143.