PH+Reporting+User+Story+-+Early+Hearing+Detection+and+Intervention+(EHDI)

include component="page" wikiName="siframework" page="PHRI Header" =User Story: Early Hearing Detection and Intervention (EHDI)=

Contact Info:
Dina Dickerson (dina.dickerson@state.or.us, phone: 971.673.0256) -- Public Health Informatics Initiative, Oregon Health Authority

Date Received:
11/18/2011

Loss to follow-up of children who have failed or missed newborn hearing screening, as well as those who were diagnosed by an audiologist with hearing loss, is a significant problem. EHDI programs have the 1-3-6 protocol to guide how the process should work: screen by 1 month, diagnose by 3 months and enter Early Intervention by 6 months of age. Much of the information needed to support referral management around EHDI resides in the EHR and related systems and is governed by standards for how the data is collected and shared. An effective referral management system that alerted providers and parents about the follow-up needs of the child and that included all of the needed information would help prevent loss to follow-up.
 * 1.1 Introduction**

A baby girl, Amy, is born in Coos Bay, Oregon. It was a normal birth and the parents were very happy with their daughter. The birth was recorded in the Oregon Vital Events Registration System (OVERS) birth module by the birth registrar. As mandated by the State of Oregon, Amy was screened for hearing loss while still in the hospital by a nurse on duty; she failed the hearing screening and the screening results were entered into OVERS hearing screening module. The parents were counseled that babies often have amniotic fluid in their ear canal that can impede a passing screening result, but that they should follow-up with the audiologist named on the referral form within the next month. They were sent home with a paper form with their screening results (pass or refer), and a list of diagnostic audiology centers in Oregon. . After the parents came home from the hospital, theyreceived a letter from the Oregon EHDI Program encouraging the family to follow-up with an audiologist. The parents scheduled an appointment for Amy with the nearest audiologist.
 * 1.2 EHDI User Story Narrative**

Since there are no audiologists in Coos Bay, the family was referred to an audiologist in Salem, a 3 1/2 hour trip by car. On the day of the appointment, Amy’s parents drove her to Salem, but she napped in the car was later fussy duringthe audiology appointment. The auditory brainstem response test requires that the baby be quiet and relaxed, and preferably asleep, so Amy’s parents had to reschedule the diagnostic evaluation for Amy. Shortly thereafter, the Oregon EHDI program contacted the audiologist’s office to determine whether the follow-up appointment had been rescheduled, and a parent attempted to contact Amy’s family to encourage them to pursue diagnostic evaluation. Even though they scheduled a second appointment,Amy’s parents were not able to get off work so they missed it. The busy audiologist did not have time to follow-up with the family to reschedule, and there was no automated office referral system to remind her to do so, nor to remind the parents to reschedule the appointment.

Time passed, and despite the attempts to encourage the family to seek diagnostic evaluation for Amy, the family was unable to do so due to barriers such as the travel distance, cost, and time away from work. As Amy neared one year old, Amy’s parents became concerned about her language development so initiated another appointment with the audiologist. By that time, Amy required sedation in order to be tested. Amy was tested and found to have severe sensorineural hearing loss. The parents were devastated, but the audiologist offered them hope by counseling them about the options to help Amy achieve communication and language development, and giving them information aboutEarly Intervention (EI), and the American Society for Deaf Children. The audiologist reported the diagnostic evaluation results to the State EHDI program, which then followed up with the family to assure they were connected to their local EI program, as well as offering the parents support through the Guide by Your Side Program, a parent mentoring program that helps parents of children with hearing loss navigate the system.

The parents were receptive to both EI and Guide by Your Side and began the process of getting help for Amy. The family qualified for EI and for financial assistance to purchase hearing aids to get started with auditory therapy with a speech pathologist. The speech pathologist encouraged the parents to consider cochlear implants for Amy and referred them to the Ear, Nose and Throat clinic at Oregon Health & Sciences University where they met with an ENT surgeon and other specialists. The parents made the decision to give Amy the opportunity to hear more than what hearing aids provide. When she was 18 months old, Amy had the cochlear implant surgery.

If there had been an automated referral management system with feedback to all of the parties involved, including the audiologist and Amy’s primary health care provider, Amy’s diagnosis might not have been delayed. She was lost to follow-up for over 6 months, and saved by her concerned parents, and persistent follow-up by the Early Hearing Detection and Intervention Program.

Address the issue of lost to follow-up for children who have failed hearing screening or who have been diagnosed but not enrolled in EI services.
 * 1.2.1 Goal**:


 * 1.2.2 Description of Data Reporting Events, Actors and Triggers**
 * //Setting//: birthing hospital or center, audiology clinic, EI center, ENT clinic
 * //Actors//: parents, hospital clinical staff, birth registrar, audiologist, EI staff, primary care provider, specialty provider, parent from Guide by Your Side
 * //Triggers//:
 * Failed or missed newborn hearing screening
 * Missed appointment
 * Confirmed diagnosis of hearing loss
 * //Data Captured in EHRs//: date of birth, mother’s contact information, screening result, insurer
 * //Data Captured in Birth Registry:// birth record, insurer, contact information
 * //Data Captured in Immunizations//: primary care provider, mother’s contact information, immunization history
 * //Data Captured in Audiology Database:// confirmed diagnosis of hearing loss
 * //Data Captured in EI Database//: EI enrollment, services and outcomes
 * //Frequency of Reports to Public Health://
 * Screening by 1 month
 * Diagnosis by 3 months
 * EI by 6 months
 * //How the Data are Processed and Used by PH//: Currently, data are spread across multiple database silos and so are extracted from the source systems and moved into a data warehouse where all data resides. There, records are linked to tell what happened and who has fallen by the wayside. Crystal Reports are used to identify those children who have missed screening, diagnosis or enrollment into EI so that the EHDI staff can follow-up with the family or primary care provider. With an automated referral system, actors in the process would be alerted according to their preferences, such as texting or email or cell phone, and given the opportunity to complete the steps in the process.


 * 1.2.3 Data**
 * Demographic
 * Child’s name
 * Child’s date of birth
 * Medical record number
 * Mother’s name
 * Insurer
 * Mother’s address and contact information
 * Race/ ethnicity
 * Clinical
 * Hearing screening result (OAE)
 * Hearing loss diagnosis with ICD code
 * Provider
 * Provider name
 * Provider identifier
 * Address and contact information
 * Specialty
 * Protocols
 * Screen by 1 month
 * Diagnose by 3 months
 * EI by 6 months

Evidence from American Academy of Pediatric surveys and other sources suggest that the lack of an automated, evidence-based referral management system contributes to the failure to get children diagnosed with hearing loss and into EI services. The 1-3-6 protocol could drive the referral management process around hearing screening, diagnosis and intervention. The referral management system would need to draw on information found in systems other than EHRs, such as the Birth and Immunization Registries.
 * 1.2.4 Other Information**

Stakeholders across programs have contributed to this proposal.
 * 1.3 Stakeholder Commitment**

Supporting Files:

 * **Description** || **File** ||
 * This document contains the initial draft user story submission. || [[file:Initial Draft Submission - EHDI - November 18 2011.docx]] ||  ||

Comments:
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