NYS Congenital Malformations Registry Converting to a Web ...
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NYS Congenital Malformations RegistryConverting to a Web-based System
National Birth Defects Prevention Network Nashville, TN
February 23-25, 2009
Congenital Malformations Registry (CMR) Background
Overview of the CMR Web-based System
Example Applications
Resources & Staff Required
Tips & Recommendations
Improvements in Data Quality and Timeliness
NYS Congenital Malformations RegistryConverting to a Web-based System
Topics
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Congenital Malformations Registry ReportingStatewide - approximately 250,000 to 300,000 births annually
Registry receives approximately 20,000reports per year from 163 hospitals statewide on approximately 12,000children
Cases can be diagnosed with 20+ major malformations
Cases can be reported multiple times from one or more hospitals & by physicians up to the age of 2
Reports from all sources are maintained and linked with a unique case number
Electronic Card File1980’s “Technology”
Congenital Malformations RegistryData Linkage & Additional Data Sources
Birth Certificates
Hospital Discharge
Index
CMR Unique Records of
Children
SPARCS NYS Hospital
Discharge Database
Death Certificates
Hospital Site Visits
Electronic Clinical LaboratoryReporting System (ECLRS)
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NYS Congenital Malformations Registry2008 Reports by Source
Routine Hospital Reports 16,508 82.6%
Hospital Discharge Index 1,810 9.1%
Hospital Discharge 1,524 7.6%(SPARCS) Audit
Hospital Site Visit 108 0.5%
Link to National Birth 37 0.2%Defects Prevention Study __________________________________________Total * 19,987 100%
* Excludes 6,653 duplicate and invalid reports
Note: All 163 hospitals submit cases through web-based reporting system as of 01/01/2006
New York State Department of Health
NYS Congenital Malformations RegistryNYS Congenital Malformations RegistryTransition from Manual to to Electronic Reporting Transition from Manual to to Electronic Reporting
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NYS Congenital Malformations Registry Web-based System
Health Provider NetworkUser Menu System
Health Provider NetworkUser Menu System
SYBASEdatabase server
CMR Tables
SYBASEdatabase server
CMR Tables
MaintenanceHospital Data
Entry & File UploadsSurveillance
GIS System Tasks
Edit Case andReport Information
Match New Reportsto Existing Reports
Match to VitalRecords & ECLRS BPA Coding
Update fromHPN
ParentMailings
QA/QC &Backups Geocoding
Hospital SPARCS Audits
NYS CMR Web-Based System
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NYS CMR Relational Database - Sybase Tables
New York State Department of Health Health Commerce System
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CMR Mandatory Access Control
CMR Staff GrantAccess & Permissions
CMR Staff Main Menu Hospital Staff Main Menu
Mandatory Access Control
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Hospital Data Entry Screen 1
Hospital Data Entry (Screen 2)
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CMR File Uploads
Upload Failed
Error Report
View Transaction Log
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Menu Buttons Available to CMR Staff on the Edit Screen
CMR Task: Review/ Edit Unprocessed Case Report Screen
Hospital
Query
unspecified anomaly of aortic valve
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Hospital Query
aortic valve stenosis
MenuOptions
Available to CMR Staff
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CMR Staff Screen for BPA Coding Malformations
SAS Applications to Monitor Hospital Reporting
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Converting to a Web-Based System: Resources
Local Area Network (LAN)
Internet Access & Browser (Netscape, Explorer)
Secure web site (https)
Server (s)- Application Development- Relational Database (Oracle, Sybase etc.)- Web Communication
Software (Java, JavaScript, SAS Intrnet)
IT / IS support (system maintenance / backups)
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Converting to a Web-Based SystemStaff
Dedicated Programmer(s) (2 to 3 years minimum)MS computer science (BS with experience)Database design Web application development Programming (JavaScript, HTML, PERL, SAS)
Reporting CoordinatorDevelop menus & screens Documentation & instructionsPromote / Implement / Pilot TestMonitor reporting / TroubleshootContact person (excellent people skills)
Converting to a Web-Based SystemTips & Recommendations
• Start by meeting with your IS/IT Department staff
• Keep it simple at first then expand - data entry- required fields with edit checks at the source- good matching algorithm for new case reports - maintain a report file with “unprocessed” cases
• Pilot test with 2 - 3 hospitals
• Conduct regional meetings to “sell” the new system- solicit ideas for new applications and/or improvements
• Allow hospitals to edit “unprocessed” case reports
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Converting to a Web-Based SystemTips & Recommendations
• Transaction log is important- Identify reporting source- Code reasons for deleting cases
• File uploads for larger hospitals- Flag errors by type and record number and reject files with
any errors - Check for gaps in reporting- Expect duplicates- Allow for hospital staff edits after upload
• Frequent backups with offsite storage
Converting to a Web-Based SystemTips & Recommendations
• Routine data QA/QC programs and procedures
• Provide clear instructions and good documentation- Electronic handbook - Reportable malformations
• Hospital communication and feedback - Maintain a hospital contact database - Notification procedures for interruptions,
updates and technical problems- Hospital “Report Cards”
• Contact other programs for advice/assistance
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Improving the QualityImproving the Qualityof CMR Dataof CMR Data
52
4147
42
80
3645
32 29 2924
0
20
40
60
80
100
Med
ian
(day
s)
2002 2003 2004 2005 2006 2007 2008
Discharge Year
Manual Electronic
Congenital Malformations RegistryCongenital Malformations RegistryTimeliness of Case reportingTimeliness of Case reporting
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Table 2. The number of cases and the percent of unspecified codes for the selected birth defect category by case reporting systems,paper-based (manual) and web-based (HPN) reporting
Cases with % of cases with unspecified unspecified codes codes by reporting system
Selected birth defect category BPA codes (unspecified BPA codes) Total N % Manual HPN p-value
Other specified anomalies of heart 746.8, 746.9 (746.880, 746.900, 746.990) 1,228 329 26.8 32.9 17.6 <0.001Other specified anomalies of pulmonary artery 747.3 (747.380, 747.390 2,179 68 3.1 3.7 2.5 <0.05Other obstructive defects of renal palvis/ureter 753.2 (753.290) 4,299 353 8.2 12.7 3.5 <0.001
Total selected cases 7,706 750 9.7
e
CMR Prevalence Compared to
National Estimates
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Cindy Miller
Zhen Tao
Ying Wang
JenniferCukrovany
Pat Steen
Not in the Photo: Charlotte Druschel & Mary Anne Giaconia
2006 CMR HPN Reporting Team
CommissionerNovello
Executive Deputy Commissioner
Whalen
Contact InformationContact InformationPhilip CrossAssistant Director Bureau of Environmental & Occupational EpidemiologyCenter for Environmental HealthNew York State Department of Health
Flanigan Square547 River Street, Room 200Troy, New York 12180-2216
Phone: 518-402-7950E-Mail: [email protected]