NYS Congenital Malformations Registry Converting to a Web-based System. NYS Congenital Malformations Registry Converting to a Web-based System
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1 NYS Congenital Malformations Registry Converting to a Web-based System National Birth Defects Prevention Network Nashville, TN February 23-25, 2009 NYS Congenital Malformations Registry Converting to a Web-based System Congenital Malformations Registry (CMR) Background Overview of the CMR Web-based System Example Applications Resources & Staff Required Tips & Recommendations Topics Improvements in Data Quality and Timeliness
2 Congenital Malformations Registry Reporting Statewide - approximately 250,000 to 300,000 births annually Registry receives approximately 20,000 reports per year from 163 hospitals statewide on approximately 12,000 children Electronic Card File 1980 s Technology 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 Congenital Malformations Registry Data Linkage & Additional Data Sources Electronic Clinical Laboratory Reporting System (ECLRS) Birth Certificates CMR Unique Records of Children Death Certificates Hospital Site Visits Hospital Discharge Index SPARCS NYS Hospital Discharge Database
3 NYS Congenital Malformations Registry 2008 Reports by Source Routine Hospital Reports 16, % Hospital Discharge Index 1, % Hospital Discharge 1, % (SPARCS) Audit Hospital Site Visit % Link to National Birth % Defects Prevention Study Total * 19, % * Excludes 6,653 duplicate and invalid reports NYS Congenital Malformations Registry Transition from Manual to to Electronic Reporting Note: All 163 hospitals submit cases through web-based reporting system as of 01/01/2006 New York State Department of Health
4 NYS Congenital Malformations Registry Web-based System NYS CMR Web-Based System Health Health Provider Provider Network Network User User Menu Menu System System SYBASE SYBASE database database server server CMR CMR Tables Tables Maintenance Hospital Data Entry & File Uploads Surveillance GIS System Tasks Edit Case and Report Information Match New Reports to Existing Reports Match to Vital Records & ECLRS BPA Coding Update from HPN Hospital SPARCS Audits Parent Mailings QA/QC & Backups Geocoding
5 NYS CMR Relational Database - Sybase Tables New York State Department of Health Health Commerce System
6 CMR Mandatory Access Control CMR Staff Grant Access & Permissions CMR Staff Main Menu Mandatory Access Control Hospital Staff Main Menu
7 Hospital Data Entry Screen 1 Hospital Data Entry (Screen 2)
8 CMR File Uploads Upload Failed Error Report View Transaction Log
9
10 CMR Task: Review/ Edit Unprocessed Case Report Screen Menu Buttons Available to CMR Staff on the Edit Screen Hospital Query unspecified anomaly of aortic valve
11 aortic valve stenosis Hospital Query Menu Options Available to CMR Staff
12 CMR Staff Screen for BPA Coding Malformations SAS Applications to Monitor Hospital Reporting
13
14 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)
15 Converting to a Web-Based System Staff 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 Coordinator Develop menus & screens Documentation & instructions Promote / Implement / Pilot Test Monitor reporting / Troubleshoot Contact person (excellent people skills) Converting to a Web-Based System Tips & 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
16 Converting to a Web-Based System Tips & 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 System Tips & 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
17 Improving the Quality of CMR Data Congenital Malformations Registry Timeliness of Case reporting Manual Electronic M ed ia n ( day s ) Discharge Year
18 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, ( , , ) 1, <0.001 Other specified anomalies of pulmonary artery ( , , <0.05 Other obstructive defects of renal palvis/ureter e ( ) 4, <0.001 Total selected cases 7, CMR Prevalence Compared to National Estimates
19 Executive Deputy Commissioner Whalen Cindy Miller Zhen Tao Ying Wang Jennifer Cukrovany Commissioner Novello Pat Steen 2006 CMR HPN Reporting Team Not in the Photo: Charlotte Druschel & Mary Anne Giaconia Contact Information Philip Cross Assistant Director Bureau of Environmental & Occupational Epidemiology Center for Environmental Health New York State Department of Health Flanigan Square 547 River Street, Room 200 Troy, New York Phone:
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