Pediatric Informatics: Computer Applications in Child Health (Health ...

448 H.P. Lehmann et al.
Integrating and warehousing data from formal and long-term studies such as the
National Children’s Study 62 on genetic and environment effects on children’s
health over time
Providing on-demand interim analyses for pediatric safety 63
Interoperable and connected medical records will provide a complex and rich set of
observational data; all patient data will potentially provide evidence. We are only
beginning to understand how to mine this new data source appropriately.
The relationship between research community and the public will change dramatically
as society demands and technology provides greater transparency to the
research process. With increasing availability of data from trial banks, researchers,
and other readers will be able trace published results to the level of individual
experiments. This level of accountability (and reproducibility) is already available
in bioinformatics research as much of what is published is based on computational
presentation of data, 64,65 and can be extended to novel presentations of traditional
statistics 66 or “hybrid” combinations of data from heterogeneous sources. 67 As
research “communities” broaden from academics to include patients and their
families, new incentives and new questions for researchers and their subjects will
arise, allowing knowledge translation and dissemination to feed back to sustain the
research process.
34.5 Case Study: ISAAC/IAN – Informatics in Autism
Research
Dr Paul Law, a pediatrician and Director of Medical Informatics at the Kennedy
Krieger Institute in Baltimore, Maryland (along with Dr Allen Tien, President and
Research Director at Medical Decision Logic, Inc. (“mdlogix”) with IAN Research
in Baltimore, Maryland), has developed information technology tools to empower
research and advocacy in the area of autism.
In 1996, while working as a medical student at a reputable institution focused on
developmental disabilities, I noticed inherent inefficiencies in the research process.
There appeared to be little forward momentum in solving data management issues
either across projects and investigators or between serial projects.
With this in mind, I began thinking about ways that technology development
paths, in combination with administrative strategies, could lead to a technology platform
for storing/processing data that would be more efficient and synergistic, avoiding
the waste, duplication, and confusion inherent in our current way of doing things.
At the same time, the Cure Autism Now Foundation was seeking a partner to develop
a Web-based application to support the wide range of clinical data that would be collected
as part of the Autism Genetics Resource Exchange (www.agre.org).
Keeping the future in mind, we agreed to create a system that would facilitate
the efforts not only of AGRE, but of many autism researchers: the Internet System
for Assessing Autistic Children (ISAAC).