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

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Chapter 34 Pediatric Research and Informatics Harold P. Lehmann, Paul A. Law and Allen Y. Tien Objectives To articulate the types of research impacted by informatics To identify new types of research that can be performed only with informatics innovations To articulate the phases of the research cycle and how information technology supports them 34.1 Introduction: The Agenda and Scope of Pediatric Research Pediatric research seeks to improve and optimize child health through scientific exploration and translation of the products and results of research into clinical practice. With advances in research methods and technology, scientists are progressively able to address new and persistent problems in clinical medicine, quality improvement, health services, public and population health and bioinformatics as well as in new domains. Current federal interest in speeding knowledge translation from laboratory to clinical practice to improve outcomes has led to the study of the improvement and optimization of the research process itself, and how translation and adoption of best practices occurs within the health community. As health care research and technologies to save and prolong life evolve, even more questions arise regarding the wisdom, responsibility, and the equity of their use, to protect children and their rights and the rights of their families. The domain of pediatric research is wide: from newborns to adults, from genetics to environment, from well children to the critically ill. Units of analysis can range from individuals to families to communities and populations. Areas of study encompass all things that affect children, their growth, health, and development from in utero exposures to home, school, playground, and even society. C.U. Lehmann et al. (eds.), Pediatric Informatics: Computer Applications 439 in Child Health, Health Informatics, © Springer Science + Business Media, LLC 2009
440 H.P. Lehmann et al. Information technology and informatics provide new opportunities to extend research boundaries by creating: Improved methods for data collection and validation “High-throughput” computing for processing large amounts of data quickly for complex research models Expanded technologies for quickly exploring very large data sets for prediction, visualization, and hypothesis generation New models for participation that include children and families as partners (as well as subjects) With these new opportunities and power of data also come new responsibilities to assure the safety and rights of subjects and their families: To assure the protections and rights of human subjects To prevent the unauthorized or unintended use of personal health information To assure the integrity of the research process, its intent, design, validity, execution, and the representation of its findings 34.2 The Research Process and Informatics The formalization of research has evolved to assure validity of the results of clinical studies and trials and to protect the safety and rights of human subjects. 1 Even if studies do not involve human subjects directly, they may involve protected health information (PHI) of individuals which require special procedures to assure patient/ subject privacy. Formalization of research projects requires a clear statement of the plan of research (its goals, objectives, and steps), an informed review of its scientific validity and ethical base (systematic literature review, preliminary data, conflict disclosures, expected risks and benefits), determination of a budget, resources, and schedule and agreement on deliverables (a report, a product or process change) between the researcher and the research funder. A framework for research formalization in the context of informatics support is presented in Table 34.1. 34.2.1 Generating a Research Question or Hypothesis Research begins with questions and observations not previously noted. Pasteur noted that “Chance favors only the prepared mind.” With the incorporation of large data sets and data mining 2 techniques, “chance” becomes a probability of detecting previously unrecognized patterns or recurrences that can suggest hypotheses for further testing. In drug research, such an approach has been used to economize costs by suggesting likely avenues for research. In clinical medicine, physicians have shown interest in using these techniques 3 for critiquing care and forecasting needs.
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Health Informatics (formerly Comput
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Editors Christoph U. Lehmann George
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vi Series Preface changes to both t
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viii Foreword This text will prove
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x Preface financial investment and
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How to Use This book This book is t
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xvi Contents 9 Pediatric Care, Safe
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xviii Contents Part VII A Vision an
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xx Contributors Donna M. D’Alessa
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xxii Contributors Christoph U. Lehm
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xxiv Contributors Mark M. Simonian,
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4 G.R. Kim pharmacy, medical educat
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6 K.B. Johnson and G.R. Kim Deaths
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8 K.B. Johnson and G.R. Kim 2.4.1 I
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10 K.B. Johnson and G.R. Kim 2.4.3
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12 K.B. Johnson and G.R. Kim Educat
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14 K.B. Johnson and G.R. Kim 2.6 Co
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Chapter 3 Core Pediatric Data Kevin
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3 Core Pediatric Data 21 3.3 Pediat
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3 Core Pediatric Data 23 3.6 Pediat
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Chapter 4 Neonatal Care and Data De
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4 Neonatal Care and Data 27 Essenti
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4 Neonatal Care and Data 29 4.3 The
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4 Neonatal Care and Data 31 some ma
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4 Neonatal Care and Data 33 Measure
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4 Neonatal Care and Data 35 4.5.2.4
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4 Neonatal Care and Data 37 4.6.3 I
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4 Neonatal Care and Data 39 4.7.2.2
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4 Neonatal Care and Data 41 Availab
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44 D.M.N. Paperny Tasks related to
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46 D.M.N. Paperny Behavioral risk d
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48 D.M.N. Paperny for outside ancil
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50 D.M.N. Paperny Video reinforceme
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52 D.M.N. Paperny 3. Litzelman DK,
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Chapter 6 Children with Development
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6 Children with Developmental Disor
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Chapter 7 Pediatric Emergency and P
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7 Pediatric Emergency and Pediatric
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84 W.H. Drummond et al. A recovery
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86 W.H. Drummond et al. 8.2.2 Forma
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88 W.H. Drummond et al. 8.2.2.1 Sys
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90 W.H. Drummond et al. The multidi
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92 W.H. Drummond et al. noise overl
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94 W.H. Drummond et al. needs requi
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96 W.H. Drummond et al. Children’
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98 W.H. Drummond et al. After the P
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100 W.H. Drummond et al. Table 8.2
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104 W.H. Drummond et al. when to su
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106 W.H. Drummond et al. It is crit
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108 W.H. Drummond et al. traditiona
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110 W.H. Drummond et al. and human
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112 W.H. Drummond et al. blood prod
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116 W.H. Drummond et al. 35. Collin
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Chapter 9 Pediatric Care, Safety, a
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9 Pediatric Care, Safety, and Stand
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134 D.M. D’Alessandro The EBM pro
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136 D.M. D’Alessandro 10.4 Pragma
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138 D.M. D’Alessandro 4. Case ser
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140 D.M. D’Alessandro Ontario, BC
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142 D.M. D’Alessandro Table 10.1
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144 D.M. D’Alessandro Children ar
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146 D.M. D’Alessandro 17. Ely JW,
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Chapter 11 Clinical Practice Guidel
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11 Clinical Practice Guidelines: Su
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162 M.J. Feldman in patients withou
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164 M.J. Feldman The art of medicin
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166 M.J. Feldman important design g
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168 M.J. Feldman Incorrect or missi
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170 M.J. Feldman Fig. 12.4 GIDEON D
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172 M.J. Feldman system or etiology
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174 M.J. Feldman ED-12: “Practica
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176 M.J. Feldman Fig. 12.7 DXplain:
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178 M.J. Feldman For GIDEON: Rabies
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180 M.J. Feldman KB on infectious d
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182 M.J. Feldman 4. Johnson KB, Fel
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Chapter 13 Managing Pediatric Knowl
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13 Managing Pediatric Knowledge Res
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Chapter 14 Supporting Continuing Pe
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14 Supporting Continuing Pediatric
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14 Supporting Continuing Pediatric
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Chapter 15 Pediatric Care Coordinat
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15 Pediatric Care Coordination: The
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Chapter 16 Prioritizing Pediatric I
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16 Prioritizing Pediatric Investmen
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Chapter 17 Aligning Pediatric Ambul
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17 Aligning Pediatric Ambulatory Ne
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258 G.R. Kim and C.U. Lehmann Elect
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260 G.R. Kim and C.U. Lehmann 18.2.
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262 G.R. Kim and C.U. Lehmann There
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264 G.R. Kim and C.U. Lehmann 13. C
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266 K.B. Johnson and C.G.M. Weigle
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280 C. Sable et al. computer for la
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282 C. Sable et al. Table 20.3 Tele
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284 C. Sable et al. without increas
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286 C. Sable et al. Fig. 20.1b Wash
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288 C. Sable et al. prior to case d
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290 C. Sable et al. presence of con
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292 C. Sable et al. 17. Sable C, Ro
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294 A.E. Zuckerman and G.R. Kim 21.
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296 A.E. Zuckerman and G.R. Kim �
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Chapter 22 Privacy Issues David M.N
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22 Privacy Issues 305 22.3 Pediatri
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22 Privacy Issues 307 patient must
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22 Privacy Issues 309 and receipt o
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Chapter 23 Electronic Mail in Pedia
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23 Electronic Mail in Pediatric Pra
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Chapter 24 Information Management b
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24 Information Management by Patien
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Chapter 25 Overview of Pediatric In
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25 Overview of Pediatric Inpatient
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Chapter 26 Prescribing/Ordering: Co
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26 Prescribing/Ordering: Computeriz
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346 S.H. Mitchell et al. 27.2.1 Med
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348 S.H. Mitchell et al. context of
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350 S.H. Mitchell et al. 27.3.3.1 C
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352 S.H. Mitchell et al. challenges
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354 S.H. Mitchell et al. work round
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Chapter 28 Medication Administratio
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28 Medication Administration and In
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Chapter 29 Understanding and Preven
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29 Understanding and Preventing Err
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