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

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34 Pediatric Research and Informatics 441 Table 34.1 Seven idealized steps in performing research with idealized informatics concerns. “Organization”: the context in which research is performed (inpatient or outpatient; governmentsponsored pilot test or commercial multicenter trial). “Workflow”: the actions taken by participants and stakeholders, at all levels. “Software”: the computer programs that support the workflow within the organization to accomplish research. “Hardware”: the physical infrastructure of computers and network devices within which software operates. Informatics methods and information technology should fill in each cell in this table, and where they do not is an opportunity for development or exploration. Research Steps Informatics Concerns Organization Workflow Software Hardware Generating research question 34.2.2 Justifying a Project The feasibility and likelihood of success of answering a research question or hypothesis definitively and safely on technical, pragmatic, and financial levels justifies investment to decision-makers and funders. 34.2.2.1 Technical Justifying project Designing study Obtaining IRB approval * Executing protocol Analyzing data Publishing results Technical justification begins with review of what is already known: a literature search of current evidence. This is done to assess: (1) what has already been done to avoid repetition, (2) if an answer to the questions or hypotheses posed already exists and (3) previous problems encountered in answering the question or confirming the hypothesis. In pediatrics, the American Academy of Pediatrics (AAP) develops pediatric clinical guidelines based on systematic reviews as a source of the strength of recommendations. AAP Guidelines 4 along with those of other organizations are assembled by the Agency for Healthcare Research and Quality (AHRQ) into the National Guideline Clearinghouse. 5 Structured evidence is also available in the form of systematic reviews (The Cochrane Collaborative 6,7 is organized into disease-related Groups and Fields (such as Child Health (although most of the pediatric reviews deal with neonatology) ). 8 Because systematic reviews and guidelines are frequently out of date, it is important for the researcher to search the literature published since the last review (usually 2–3 years). The National Library of Medicine provides a resource called Clinical Queries 9 that facilitates location of published evidence on therapy, diagnosis, prognosis, etiology, and prediction rules as well as systematic reviews on a topic from PubMed citations. A medical librarian trained in evidence-based searches should also be consulted for inclusive searches of appropriate 10,11 databases, which may be a requirement for certain projects.
442 H.P. Lehmann et al. 34.2.2.2 Pragmatic Pragmatic justification (such as pilot studies) is needed to determine variations in data, to calculate a sample size and/or to confirm the logistical practicalities of performing a definitive study. Traditionally, an investigator performs a chart review or a small prospective study for these purposes. Electronic medical records and data-mining can facilitate this sort of data collection to guide research and may be helpful for “orphan” diseases (rare diseases where little published (or funded) research is available). Another preliminary approach is to simulate a study according to a mathematical model, using data from existing or hypothetical (virtual) patients using commercially available products. 12–13 Other pragmatic tools may provide insights as to cost-benefit or cost-effectiveness of studies. In the UK, the National Institute for Health and Clinical Excellence (NICE) 14 uses such models to justify, not only whether a research problem ought to be addressed, but also justifies the level of social financial investment. 15 Other resources include CRISP, 16 an online database of proposals funded by the NIH, and the Clinicaltrials.gov 17 databank of all ongoing clinical trials (which unfortunately lacks many pharmaceuticalcompany funded projects). Other trial data banks are available through online communities of interest. 34.2.2.3 Financial Financial justification determines the level of funding needed to pay for services, salaries, and facilities. Systematic collection of data (research) requires resources beyond the operational assets typically available in the course of clinical and even administrative practice. The NIH budgets $29 billion annually for biomedical research, with $1.3 billion going to the National Institute of Child Health and Human Development. 18,19 There is a number of mechanisms of support, where the natural sequence for academic investigators starts with “K” and “F” awards (mentored research) or R21 (pilot) to R01 (investigator initiated) to P (Center grants). Other traditional sources include foundations and companies with interest in a clinical problem or particular disease, while federal agencies (such as AHRQ) fund projects in health services research and quality improvement. The World Wide Web has become the standard mechanism of announcing and locating announcements and submitting and tracking proposals. As of February 2007, all NIH research grants must be submitted electronically. 34.2.3 Designing a Study Traditional study design is based on established methodologies and statistical models considered in the justification stage. Design is determined by the types of questions or hypotheses that are to be answered. 20,21 A central design question is “What
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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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