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

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34 Pediatric Research and Informatics 451 The project removes many of the obstacles to families’ participation and enhances study recruitment. The parents of a child with autism face many stressors, in terms of time, freedom, and finances. They may find it impossible to overcome the demands of participating in a traditional autism study, such as having to take time off work or travel to a distant clinic or university. Through IAN, they can participate over the Internet, from home and at their convenience. The project takes advantage of the fact that doing research on autism requires the measurement of nonbiological phenomena: behavior, communication styles and social approaches. These are usually captured by the use of psychometric tools, such as the Autism Diagnosic Interview – Revised (ADI-R), which rely on parent report. It is the people who live with a child with an autism spectrum disorder (ASD), after all, who naturally possess data on their child’s behavior and way of being, over time and across settings. Using a web based interface, IAN solicits parents’ knowledge and experience – information crucial to autism researchers. IAN is designed to collect data from the parents of a child with an ASD in a secure online environment, offering a sense of privacy and other features that make data collection easier on the parent, such as being able to stop and start the process at their convenience. We are currently collecting crucial longitudinal data on a variety of topics, from diagnosis to comorbidity, from family history to treatments and outcomes. Parents are also asked to complete the Social Communication Questionnaire (SCQ) and the Social Responsiveness Scale (SRS) – instruments measuring the core symptoms of autism over time. Content will be continually added to our online questionnaire based on the interest of families and researchers alike. In accordance with our ongoing philosophy of sharing and dissemination, data collected is not held as proprietary, but is made available for use by the autism research community. Families are responding with enthusiasm to the opportunity to provide data and “be part of the solution.” Eighteen months after the project’s launch, more than 25,000 individuals are consented to participate in IAN, including over 8,000 children with ASD. In brief, the Interactive Autism Network is utilizing a robust online shared research informatics environment, and engaging a vast array of stakeholders in every step of the research cycle, to facilitate the acceleration of autism research. Acknowledgments Thanks to Peter Rowe for examples of scientific discovery in pediatrics. References 1. US Food and Drug Administration. Guidances, Information Sheets, and Important Notices on Good Clinical Practice in FDA-Regulated Clinical Trials; 2008. Available at: http://www.fda. gov/oc/gcp/guidance.html. Accessed December 21, 2008. 2. Downs SM, Wallace MY. Mining association rules from a pediatric primary care decision support system. AMIA Annu Symp. 2000:200–204.
452 H.P. Lehmann et al. 3. Chae YM, Kim HS, Tark KC, Park HJ, Ho SH. Analysis of healthcare quality indicator using data mining and decision support system. Expert Syst Appl. 2003;24(2):167–172. 4. American Academy of Pediatrics. Clinical Practice Guidelines. Available at: http://aappolicy. aappublications.org/practice_guidelines/index.dtl. Accessed December 20, 2008. 5. Agency for Healthcare Research and Quality. National Guideline Clearinghouse. Rockville, MD; 2008. Available at: http://www.guideline.gov/. Accessed December 20, 2008. 6. The Cochrane Collaboration. Cochrane Collaboration Website; 2008. Available at: http:// www.cochrane.org/. Accessed December 20, 2008. 7. Higgins JPT, Green S. Cochrane Handbook for Systematic Reviews of Interventions. Oxfordshire, UK: Wiley. 8. Cochrane Child Health Field. Cochrane Child Health Website, Edmonton, Alberta, CANADA; 2008. Available at: http://www.cochranechildhealth.ualberta.ca/index.html. Accessed December 20, 2008. 9. National Library of Medicine. PubMed Clinical Queries; 2008. Available at: http://www.ncbi. nlm.nih.gov/entrez/query/static/clinical.shtml. Accessed December 20, 2008. 10. National Library of Medicine. OLDMEDLINE; 2008. Available at: http://www.nlm.nih.gov/ databases/databases_oldmedline.html. Accessed December 20, 2008. 11. Elsevier. Embase.com; 2008. Available at: http://www.embase.com/. Accessed December 20, 2008. 12. Pharsight Corporation. Pharsight Knowledgebase Server; 2008. Available at: http://www. pharsight.com/main.php. Accessed December 20, 2008. 13. Cambridge University, MRC Biostatistics Unit. The BUGS Project; 2008. Available at: http:// www.mrc-bsu.cam.ac.uk/bugs/. Accessed December 20, 2008. 14. National Health Service’s National Institute for Health and Clinical Excellence. Paediatric Guidances; 2008. Available at: http://www.nice.org.uk/search/guidancesearchresults.jsp? keywords=paediatric&searchType=guidance. Accessed December 20, 2008. 15. Claxton KP, Sculpher MJ. Using Value of Information Analysis to Prioritise Health Research: Some Lessons from Recent UK Experience. Pharmaco Economics. 2006;24(11):1055–1068. 16. National Institutes of Health ERA Commons. Computer Retrieval of Information on Scientific Projects (CRISP) Database; 2008. Available at: http://crisp.cit.nih.gov/. Accessed December 20, 2008. 17. National Library of Medicine. ClinicalTrials.gov; 2008. Available at: http://clinicaltrials.gov/. Accessed December 20, 2008. 18. Tauberer J. GovTrack.us: H.R. 3043–110th Congress: Departments of Labor, Health and Human Services, and Education, and Related Agencies Appropriations Act, 2008. Available at: http://govtrack.us. Accessed December 20, 2008. 19. National Institutes of Health Office of the Budget. IC Distribution of FY 2008 Enacted Level With Supplemental; 2008. Available at: http://officeofbudget.od.nih.gov/ui/fy2008elws.html. Accessed December 20, 2008. 20. Swinscow TDV. Statistics at Square One. BMJ; 1997. Available at: http://www.bmj.com/ statsbk. Accessed December 20, 2008. 21. Modgil S, Hammond P. Decision support tools for clinical trial design. Artif Intell Med. 2007;27(2):181–200. 22. Chuang JH, Hripcsak G, Heitjan DF. Design and analysis of controlled trials in naturally clustered environments: implications for medical informatics. J Am Med Inform Assoc. 2002;9(3):230–238. 23. Goldfarb NM. Save the planet: eIRB solutions for everyone. J Clin Res Best Prac. 2006;2(2). Available at: http://firstclinical.com/journal/2006/0602_eIRB.pdf. Accessed December 20, 2008. 24. CureSearch. Cancer Oncology Group. Our Research; 2005. Available at: http://www.curesearch.org/our_research/. Accessed December 20, 2008. 25. Interactive Autism Network. Research; 2006. Available at: https://www.ianresearch.org/. Accessed December 20, 2008. 26. Office for Civil Rights. HIPAA: Medical Privacy - National Standards to Protect the Privacy of Personal Health Information; 2008. Available at: http://www.hhs.gov/ocr/hipaa/consumer_ rights.pdf. Accessed December 20, 2008.
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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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386 D.C. Stockwell and A.D. Slonim
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