Appendix G
National Children’s Study Assembly
Breakout Session Summary: Technology-How Can Information Technology Help Implement the National Children’s Study in Your Community?
December 17, 2003
Sheraton Atlanta Hotel
Atlanta, GA
Facilitators:
David Songco, NICHD, NIH, DHHS
Sherry G. Selevan, Ph.D., Office of Research and Development, EPA
Objective
The objective of this breakout session was to obtain input from the various communities that would be linked to the National Children’s Study. All suggestions for implementing the Study were welcomed. The participants were asked to:
- Focus on implementation issues, including collecting and tracking data, interacting with participants, and encouraging their participation
- Give specific ideas and suggestions in relation to the Study.
The meeting began with the attendees introducing themselves. Unfortunately, there were only two community representatives: George S. Jesien, Ph.D., Association of University Centers on Disabilities (AUCD), and William R. Pace, M.D., Louisiana State University Health Sciences Center. The other attendees represented the Study team or information technology providers.
Best Practice
Dr. Jesien provided insight into some of the issues the network of Study data collection sites might face. According to Dr. Jesien, AUCD members represent every state and most territories in the United States, as well as more than 200 universities and medical schools. Through its membership, AUCD serves as a resource for local, state, national, and international agencies, organizations, and policymakers concerned about individuals and their families living with developmental and other disabilities.
Dr. William described how Louisiana’s state network could support the Study. The Louisiana State University Health Sciences Center Health Care Services Division consists of nine hospitals throughout the state of Louisiana. The Health Care Services Division provides quality medical care to residents of Louisiana, regardless of income or insurance coverage; and it provides for the state’s medical and clinical education needs, thereby ensuring that all residents of Louisiana have access to well-trained health professionals.
Communication
Participants discussed the merits of pushing information out to the network versus the clinical sites pulling in the information as needed.
Environmental Samples
A major challenge of the Study data collection is the requirement for collecting both clinical and environmental data.
Laboratory Equipment Standards
Participants discussed the relative merits of the Study providing laboratory equipment to the clinical data collection sites. The provision of laboratory equipment could improve the consistency and quality of the data collected but at substantial costs.
Recruitment and Retention
Participants identified recruitment and retention as critical to the success of the Study and discussed ways that information technology could assist with these processes. Topics included:
- The use of a call center
- Need long- and short-term plans for incentives
- Use of public-private sponsors (for example, AOL, Yahoo, MSN, and Verizon)
- Web TV/reminders
- Providing a low-cost digital camera for participants to collect data and to use for themselves
- Providing cell phone service as an incentive and means for collecting data
- Free e-mail
- Free Internet messaging program
- Free training
- Data collection devices (questionnaires, handheld computers)
- Discussions with airline consultants to identify behaviorists’ incentives.
Resistance to Change
Participants suggested that both Study participants and staff might resist change. Participants cited the following:
- People do not like change.
- Collection centers may be understaffed and have inadequate time for innovation.
- People will not use full features of devices (that is, no time available, learning curve).
Recommendations
Participants listed the following areas for further efforts to assure the acceptability and use of information technologies within the Study:
- Follow threads (university people, government people, and private sector).
- Collect thoughts on how information technology can improve standards.
- Develop concept of operations (gather comments from people and critique them).
- Collect genomic data.
- Welcome peer review and comments.
Participants suggested that an e-mail group be established to continue discussing information technology as it relates to the Study via an electronically threaded dialogue.
In Attendance
Patrick J. Barry, Premier Research
Stephen J. Bedosky, B.A., M.S., LFR Levine Fricke
Margo Brinkley, RTI International
Carry W. Croghan, M.S., Office of Research and Development, EPA
Chalk Dawson, Booz Allen Hamilton Inc.
Jai Evans, B.A., NIH, DHHS
Anne E. Imrie, Science Applications International Corporation
George S. Jesien, Ph.D., Association of University Centers on Disabilities
Raffael Jovine, Ph.D., Booz Allen Hamilton Inc.
Christopher B. Luce, Booz Allen Hamilton Inc.
William R. Pace, M.D., Louisiana State University Health Sciences Center
Sherry G. Selevan, Ph.D., Office of Research and Development, EPA
David Songco, NICHD, NIH, DHHS