Utilizing a Statewide Immunization Registry for EHDI Tracking

Utilizing a Statewide Immunization Registry for EHDI Tracking and Reporting 2007 National EHDI Meeting Salt Lake City, Utah March 26, 2007 presented by: Kathryn Perko Aveni, RNC, MPH Research Scientist, EHDI Program co-author: Zina Kleyman NJIIS Project Manager New Jersey Department of Health and Senior Services

Faculty Disclosure Information In the past 12 months, I have not had a significant financial interest or other relationship with the manufacturer(s) of the product(s) or provider(s) of the service(s) that will be discussed in my presentation. This presentation will not include discussion of pharmaceuticals or devices that have not been approved by the FDA.

New Jersey Immunization Information System (NJIIS) • Developed in 1997, web enabled since May 2002 • September 2, 2004 – Governor signed Immunization Registry Act • NJIIS was twice recognized by Centers for Disease Control and Prevention – October 27, 2003 - Connect Award – October 18, 2004 - Grow Award • October 2006 – named Best Practice of the Month by American Immunization Registry Association

NJIIS Primary Purposes • Provide current recommended immunization schedule for all age groups • Consolidate immunization information from all providers into one record to provide an accurate immunization assessment • Eliminate the use of manual vaccine administration logs

NJIIS Primary Purposes • Ensure access to preventive health/screening information such as immunization, Flu, TB, Lead and Newborn Hearing Screening • Help communities assess their immunization coverage and identify pockets of need

NJIIS Technical Environment • Technology Components – – J 2 EE for middleware on Weblogic server v 8. 1 Oracle 9 i for database JSP/HTML for presentation XML for data interfaces with external systems • Infrastructure Components – Intel-Xeon platform – Windows 2003 servers

NJIIS User Environment NJ State BATCH PROCESSES EMR, Billing INTERNET Electronic Birth Certificates demographic and immunization records from Medicaid and WIC. Lead and Newborn Hearing screening Immunization Records Schools, Daycares etc Physicians NJIIS MCO, HMO Clinics, Long-term healthcare facilities Local Health Departments Hospitals Data Entry and Reports Saturation Measures and Immunization Coverage Reports

NJIIS Statistics • 450 Providers • 1, 100, 000 Patients • 10, 000 Doses Every month • 7, 000 Patients are loaded from EBC • 4, 500 Patients are entered through on-line interactive data entry via Web • 100, 000 Doses are entered through on-line interactive data entry via Web • 25, 000 Doses are loaded electronically from Medicaid, EMR and billing systems

NJ EHDI – History • 1977: Law required “evaluation” of newborns for hearing loss • 1980: Hospitals sent paper forms to DHSS for babies with risk indicators for hearing loss • 1994 -1997: Risk indicators & screening results (if done) now reported via EBC • 2002: Law required universal newborn screening. Inpatient results & risks reported via EBC, outpatient results on paper form

NJ EHDI - Registry Law includes: – “The commissioner shall establish a central registry of newborns…. for the purposes of compiling statistical information and providing follow-up counseling, intervention and educational services…” – “A…professional who performs testing …shall report the results…in a manner and on forms prescribed by the commissioner. ” 2002: EHDI database developed using Microsoft Access. EBC records populate database. Paper forms with outpatient test results data entered by DHSS Clerk.

NJ EHDI - Statistics 2005 occurrent births (110, 836 births): • Screened either before d/c or by 1 mo: 99. 0% • Refer on final inpatient screening: 3. 8%* • Oupatient f/u on refers (rescreen or dx testing): 58. 9%* – Timely f/u (by 3 months): 44. 1% • Diagnosed w/ HL: 1. 04 per 1000 births • In EI by 6 mo: 37. 7% of babies dx w/ HL *Over 7500 paper outpatient follow-up reports submitted for 2005 births

NJIIS & EHDI Partnership Why: • Allow electronic Web-based reporting by providers doing rescreening and diagnostic testing – More timely – Avoid duplicate and cumbersome writing of demographic information – Avoid errors & incomplete reports – Ability to view previous results • IIS system already in place – cheaper and easier than building an EHDI Web system • Pediatricians can check status of immunizations and hearing in one system

NJIIS & EHDI Partnership How: • NJIIS in Division of Epidemiology, Environmental and Occupational Health • EHDI in Division of Family Health Services • Preliminary meetings to discuss goals • Memorandum of Agreement (MOA) signed by assistant or deputy commissioner over each Division • Transfer of funds from CDC & HRSA grants

Project Timeline • Spring 2006: MOA developed, EHDI forms & other specifications provided to NJIIS • Spring-Summer 2006: NJIIS Programming • Aug. 2006: Beta testing by EHDI program • Sept. 2006: – Inpatient screening results viewable to PCPs – 4 facilities volunteered as pilot test sites for entering outpatient results • Dec. 2006: Began full roll-out/user training

System Overview

Home Page http: //njiis. nj. gov

Administrative login

Provider Setup EHDI data coordinator has admin access to IIS system to add “EHDI Providers” Address info used to auto fill facility address on reports

User Setup EHDI data coordinator also adds “EHDI Users” System access can be revoked by simply checking box

User/Provider Setup EHDI Users can be assigned to multiple facilities: practice with several offices, user w/ 2 part-time jobs

EHDI User login

User Login

Provider Choice User starts by selecting the facility they are reporting from (if work at >1 facility)

Search - Identifiers User can choose to search with child info, identifiers or mother’s name

Search – Child Name/DOB

Search Results can be re-sorted by any column. In this example the results are re-sorted by Birth date. To re-sort the list click on column title

Patient Information Page EHDI Users have access to only certain tabs (aliases, & addresses, but not immunization and med hx)

Aliases AKAs can be entered and are used in generating search screen results

Relatives/Addresses Alternate guardians can be added. Address/phone number info can be updated

Patient Information Page Hearing Screening link is only active for “EHDI Users” and Pediatricians who have “claimed” PCP status for child

Audiology Facility of Record EHDI Users are asked to note if they are “primary” audiology follow-up facility for purposes of reports

EHDI Summary Page Initially displays risk info and inpatient screening results from EBC

Clicking an exam date on the summary page opens full report EBC system includes some HL risk indicators

EHDI Summary Page Buttons at the bottom of the screen are clicked to start a new outpatient follow-up report Summary of outpatient follow-up is added as forms are completed in the system

Demographic section is auto-filled with information already stored in the NJIIS system Reason for testing also auto-fills Facility name & address is auto-filled based on user login

Risk Indicators Pop-up Box

Test result sections are mainly check boxes. Evaluator is pick list of people working at that facility. Phone autofills based on phone number stored in user setup

Saving form triggers data validation checks: • Must have exam date • Exam date must be > DOB • If dx HL must have type & degree • Etc.

Form can be printed after saving (to send copy to pediatrician) DHSS does not require a paper copy

EHDI Summary Screen – Pedi User Pediatricians have ability to view results and can generate a “lost” form. If doing testing in their office, they must be set up with “EHDI User” user names

Demographics auto-fill the same as with the follow-up report

Both Pediatricians and Audiologists have the ability to run reports for “their” patients

Report Sample

EHDI program in administrative section can create extract to export data to Excel

User Training

User Training • Several hospitals were asked to volunteer computer rooms. 4 hospital sites were used. • Medical Coordination Centers (MCC) – DHSS maintains 8 facilities throughout the state as response coordination centers for mass casualty incidents (bioterrorism, natural disaster, epidemic outbreak). 5 of these sites were used.

User Training New Jersey • 4 th smallest state in US • 70 miles wide/150 miles long MCC Training Sites Hospital Training Sites

User Training • Notification via email to hospital-based EHDI contacts and providers who previously submitted forms • Follow-up phone calls to large volume facilities that did not register promptly • Attendees received certificate for 3 continuing education hours that can be used for State audiology licensure requirements

User Training • A training version of system was used to allow “fake” data entry on “fake” children • Case studies were developed representing a variety of scenarios (rescreening, diagnosed hearing loss, lost to follow-up, out-of-State birth, etc. ) – 7 scenarios X 15 users • 2 or 3 EHDI-team members were at each location to allow for room roaming/troubleshooting

User Training December 13, 2006 – February 28, 2007 • 12 sessions held at 9 sites (am & pm at some sites) • Between 6 and 14 users were signed up for each session • Staff from 42 hospitals/audiology facilities trained • 117 users trained – audiologists, techs, secretaries, maternity dept. staff • Some additional users will be trained by co-workers who attended training sessions • A couple additional sessions will be offered in May, then probably annually The EHDI program is grateful for a very mild NJ winter

Hospital Computer Room

Hospital Computer Room

Hospital Computer Room

MCC

MCC

Phase in of IIS Use # forms data entered:

IIS – DHSS vs. Self-Report # forms data entered:

Challenges, Barriers and Works in Progress

Historical EHDI Data • Inpatient results only loaded for births after 1/1/06 – Plan to add births back to 2003 during 2007 • Outpatient follow-up only in system since Fall 2006: – For pilot test sites since Oct. 2006 – All paper forms received after Nov. 1 2006 entered into IIS – During 2007, plan to back load forms entered in prior Access EHDI database. BUT form design was updated in early 2006 – so older forms can’t be ‘mapped’ to fields on current forms.

Added Patients/Duplicates • If search for child is unsuccessful on the search screen, EHDI user can add patient to the system • IIS system starts a record for babies from: – EBC records from Vital Statistics – Pediatrician offices can add patients – EHDI users can add patients

Added Patients/Duplicates EBC system will initiate an NJIIS record only when: • Parent consented to IIS participation. If IIS consent field in EBC is “no”, no IIS record is created – For 2006 births 74% yes, 5% unknown, 21% no • File has been uploaded from the hospital’s EBC (via modem – using old DOS system) to Vital Statistics – should occur w/in 5 days of discharge – currently about 55% were submitted in 5 days, 84% by 2 weeks • NJIIS must receive file from VS (once/week)

Added Patients/Duplicates • “Adds” by EHDI users are common due to: – Time lag • Rescreen at 1 wk of age, often not in IIS yet – Unsuccessful search efforts by users • Often know as “baby boy/girl [mom last name]” and not legal (EBC) name • “Two last name” babies often don’t hit on Soundex match • Late EBC records will merge automatically with “adds” if mom/baby name and DOB match. If no match, may result in duplicates – need manual cleaning

Transfers • IIS Program did not receive any records on transferred babies prior to 1/1/07 • Therefore IIS populated with birth hospital results only (typically none) • Transfer records now being sent to IIS program, but must have enough data to match

Summary – Using IIS for EHDI Reporting • Addition to currently used system allowed a very costeffective way to incorporate electronic reporting • Brings Pediatricians into process • End-user friendly – exactly mimics paper report forms – pilot tested by high volume or unique situation locations • Large, free, and hi-tech training rooms were important to successful roll-out • Ongoing “tweaking” of system and process is anticipated