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

34 Pediatric Research and Informatics 445
The appropriateness of the level of detail available and its adequacy and
completeness for the research project.
Data that is not included. In pediatrics, data fields that may not be included in
adult encounter forms, such as weight or parents’ names, must be considered
when using electronic patient data for a protocol.
The form of the data being collected. Photographed text records may be manually
reviewable but not electronically usable. Researchers need to make allowances
(including manual review and reconciliation) of a variety of data types that may
be required by protocols, including photographic, biological, and genetic data.
Large collaborative efforts to collect clinical data for reuse in research include
the cancer Biomedical Informatics Grid, or caBIG. 40 The NIH’s recent effort in
providing Clinical and Translational Science Awards 41 includes an Informatics Key
Function, 42 with over ten Working groups or Taskforces, including data repositories
and standards and interoperability.
34.2.5.3 Budget Management and Reporting
Decision support and scheduling tools, available through generic productivity tools
for keeping track of budgets, clinical appointments and data submissions associated
with research protocols are now ubiquitous and can be modified for research.
Because of increasing demand for regulatory oversight of accurate and proper
billing of services that are covered by clinical trials for patients who also receive
medical care, continued development of tools to simplify navigation of the evolving
complexities of compliance will be needed. 43
34.2.6 Analyzing the Data
Beyond spreadsheets and programs that handle standard statistical models, specialized
software that supports sophisticated modeling and data manipulation are
available for data mining, factor analysis, structural equation models and belief/
influence networks as well as visualization (such as geographical information
systems). 44 Such tools can facilitate accurate result processing and facilitate monitoring
of research for early termination of studies when a large benefit or unanticipated
harm of an intervention is detected.
34.2.7 Publishing the Results
The standard model of publishing is via peer-review in recognized journals.
Professional reputations are built on publications in journals according to their
Impact Factor, a bibliometric measure of influence within the scientific community