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National Children’s Study Workshop

Innovative Technologies for Remote Collection of Data
May 12–14, 2003
Hyatt Harborside Hotel
Boston, MA

This meeting was held in conjunction with the National Children’s Study, which is led by a consortium of federal agency partners: the U.S. Department of Health and Human Services (including the National Institute of Child Health and Human Development [NICHD] and the National Institute of Environmental Health Sciences [NIEHS], two parts of the National Institutes of Health, and the Centers for Disease Control and Prevention [CDC]) and the U.S. Environmental Protection Agency (EPA).

 

The purpose of the workshop was to identify and evaluate innovative technologies for the remote measurement, collection, and transmittal of medical, biological, environmental, and exposure-related data for the National Children’s Study (Study). The workshop was structured around three workgroups:

  • Medical and biological measurements
  • Data collection
  • Environmental measurements.

These workgroups were chaired, respectively, by Richard Shiffman, M.D., Yale University; David Songco, NICHD, NIH, DHHS; and James J. Quackenboss, M.S., EPA.

 

Medical and Biological Measurements Workgroup

 

The workgroup reviewed the five thematic areas of the Study to focus their discussion on technologies that could be applied to medical and biological measurements. The five thematic areas are asthma, obesity and physical development, neurodevelopment and behavior, injury, and pregnancy outcomes.

 

The workgroup determined that there were several data and specimen collection processes that would be overarching among the thematic areas of the Study. The workgroup labeled these processes “big picture items” and determined that each of these items would need to be considered when developing the application of technology for data collection within each of the five thematic areas. The “big picture items” identified by the workgroup were:

  • Remote physiological measurements
  • Specimen collection
  • Health records collection (from physicians, pharmacists, and image information)
  • Other clinical sources
  • Genetic information.

The workgroup evaluated the different technologies that could be developed to obtain medical and biological measurements during the Study.

 

Key Findings of the Medical and Biological Measurements Workgroup

 

The workgroup evaluated the different technologies that could be developed to obtain medical and biological measurements during the National Children’s Study. The workgroup categorized the technologies using the following framework:

  • The availability of or time to develop the technology
    – Currently available
    – Short development time
    – Long development time
  • The value quadrant of the technology to the Study
    – 1 = high value and low effort
    – 2 = high value and high effort
    – 3 = low value and low effort
    – 4 = low value and high effort
  • The burden that using the technology would impose on the participant or the provider
    – 0 = none
    – 1 = very low burden
    – 2 = low burden
    – 3 = high burden
    – 4 = very high burden
    – N/A = not applicable.

The following table lists only those technologies that have high value and low burden. The other technologies were deemed less desirable due to high effort or burden.

 


Technology

Time to Develop

Value Quadrant

Burden to Patient

Burden to Provider

Physical Parameters

Diaper sensors

Long

2

1

N/A

Clothing sensors

Short

2

1

N/A

Electronic game (child focused)

Long

2

1

N/A

Home spirometry game package

Current

1

1 or 2

N/A

Accelerometer

Short

3

1

N/A

Accelerometer in helmet

Current

1

1

N/A

Accelerometer in shoe

Short

1

1

N/A

Accelerometer in temporary tattoo

Current

1

2 or 3

N/A

Diary

Current

1

2 or 3

N/A

Specimen Collection

Filter paper blood sample

Current

1

2

N/A

Home chemistry kit, for example, cartridge analysis of urine

Current

1

1

N/A

RF ID tracking

Current

1

0

N/A

RF ID urine analysis

Short/Long

2

1

N/A

Blood draws by experienced staff

Current

2

2 or 3

N/A

Swab it and mail

Current

1

1

N/A

Hair—at home

Current

1

1

N/A

Semen

Current

2

2

N/A

Milk

Current

2

2

N/A

Primary Care Physician Medical Records
and Pharmacy Records

Electronic medical records

Current/Long

2

0

2 or 3

Web

Current

2

0

2 or 3

Personal data assistants (PDAs)

Current

2

0

2 or 3

Photocopy and fax/scan

Current

2

0

2 or 3

Abstraction by Study personnel

Current

2

0

1

Interface to pharmacy database

Current

2

0

1 or 2

Scannable bar code on prescriptions

Short

2

1

1 or 2

Record to smart card for
patient history record

Current/Long

2

2

3

Images

Pregnancy ultrasounds (2-D)

Current

1

1

N/A

Pregnancy ultrasounds (3-D)

Current

2

1

N/A

Digitized spirometry signals

Current

2

1

N/A

Noninvasive images of arteries to identify blood plaques in youngsters

Current

3

1

N/A

Digital photos of neighborhoods

Current

1 or 2

1

N/A

Images of birth defects

Current

1

1

N/A

Images for bone age

Current

1

3

N/A

DEXA fat/lean mass

Current

1

3

N/A

Bioimpedance assessment

Current

3

1

N/A

 

Current

 

 

N/A

Genetic Information

Buccal cells

Current

1

1

N/A

Blood current

Current

1

2

1

Cord blood

Current

1 or 2

0

2

Nails

Current

1

1

N/A

Mouthwash

Current

1

1

N/A

Tissues as available

Current

1

0

2

Computer-Assisted Telephone Interviewing (CATI)

Current

1

1 or 2

N/A



 

Data Collection Workgroup

 

The goals of the workgroup were to:

  • Discuss and discover innovative approaches to the collection of data that could benefit the Study
  • Determine data collection architectural directions that will facilitate the adoption of new technology
  • Establish criteria for evaluation of innovative data collection technologies in the Study
  • Define approaches to leverage technology to reduce respondent burden and improve retention of participants
  • Define parameters to improve and assure the quality of data.

The presentations by the invited workgroup members covered the following topics:

  • Criteria for evaluating innovative data collection technologies
  • Considerations in data architecture and data management
  • Lessons learned from multisite studies
  • Hybrid communications architecture networks
  • Secure centralized portals
  • Quality assurance considerations
  • Automated remote data collection
  • Leveraging technology to improve participant retention.

Key Findings of the Data Collection Workgroup