At a Glance
May 17, 2013
"Why I Participate" by Parent Partner Wendy Hewitt
May 10, 2013
Nobody Suspected: A Parent's Perspective on Children's Hearing Loss Diagnosis [Video]
March 18, 2013
"Why I Participate" by Parent Partner Tonya Bowman
What: A collaborative improvement project to increase the rate of documented follow-up and intervention services for infants with hearing loss
Why: The earlier babies are diagnosed and receive services for hearing loss, the less likely they are to fall behind in communication and other cognitive development.
Who: Early Hearing Detection and Intervention (EHDI) offices representing 28 states plus the District of Columbia, Puerto Rico, and St. Thomas, in collaboration with parent partners, audiologists and other healthcare professionals and advocates
When: September 2011- September 2013
Funder: The Health Resources and Service Administration’s Maternal and Child Health Bureau (MCHB)
NICHQ: Improving Hearing Screening in Infants
NICHQ: Improving Hearing Screening in Infants (Captioned)
97% of the almost 4 million infants born in the United States each year are screened for hearing loss. However, the success of the newborn hearing screening program depends on far more than the initial step of screening. Nearly one-half of infants screened for hearing loss at birth are lost to follow-up or lost to documentation, and close to one-third of babies diagnosed with hearing loss are not documented as having entered intervention. This gap in the system of care for newborns with potential hearing loss threatens to undermine the development of these infants, as well as the success of the screening program.
>> Read more about newborn hearing screening.
>> Watch a video in which Helen Cotton-Leiser, a parent partner in the IHSIS project and Executive Director of the Hands & Voices of Oregon, shares her story of her two daughters' hearing loss diagnoses.
The Health Resources and Service Administration’s Maternal and Child Health Bureau (MCHB) has engaged NICHQ to help state Early Hearing Detection and Intervention (EHDI) programs meet their goals of infant hearing screening, diagnosis, and intervention at 1, 3, and 6 months of life, respectively.
>> Read More: Quality Improvement Efforts Target Gaps in Newborn Hearing Screening Programs (The Hearing Journal: September 2012 - Volume 65 - Issue 9)
State EHDI programs promote universal newborn hearing screening and timely diagnosis of hearing loss. They also develop effective tracking and follow-up procedures as a part of the public health system, prompt enrollment in appropriate early intervention services, ensure a medical home for all newborns, and strive to eliminate geographic and financial barriers to service access.
Project participants are using quality improvement methods to test and implement new ways to improve the timeliness of screening, audiologic diagnosis, and entry into intervention. Participants are collaborating with hospitals, primary care providers, audiologists, ENTs, interventionists and families to improve the delivery of paperwork to both families and doctors as well as to develop methods for tracking families who fall through the cracks.
NICHQ worked on these changes with 22 states through three previous collaborative improvement projects; you can read the final report from these projects, entitled "Enhancing Communication: Improving Care for Infants with Hearing Loss" [PDF]. Building on this success, the current work involves two additional projects with the remaining 28 states, the District of Columbia, and Puerto Rico. The first of these, which began in June 2011 and will run through in June 2012, includes participants from Alabama, Alaska, Georgia, Idaho, Kentucky, Louisiana, Missouri, Mississippi, New Hampshire, New Mexico, Ohio, Rhode Island, South Carolina, and Washington DC.
>> Read More: "Why I Participate" by Parent Partner Tonya Bowman
>> Read More: "Why I Participate" by Parent Partner Wendy Hewitt
Goals and Activities
Teams from participating states are testing and applying strategies to improve system performance based on promising changes recommended by experts and identified by past collaborative improvement teams. The teams’ goals are to achieve a system in which:
- 97% or more of newborns are documented to have completed hearing screening no later than 30 days (corrected age)
- 90% or more of infants that did not pass their screen are documented to have received an audiologic evaluation no later than 90 days of age
- 80% or more of children that have a diagnosed hearing loss are documented to be enrolled in early intervention no later than 180 days of age
Participating teams are working to achieve these goals by:
- Using quality improvement approaches to test implementation of a checklist approach to improving the quality of screening, audiologic diagnosis, and entry to intervention
- Spreading successful approaches widely across their EHDI systems
- Reporting on elements of CDC data quarterly, using these data to monitor progress in system improvement
- Applying quality improvement principles to improving their data collection and reporting processes
Project Status (Updated May 2012)
The 14 state teams participating in the current collaborative improvement project have been working since June 2011 to improve the processes by which infants are screened for hearing loss, receive their diagnosis, and are enrolled in early intervention. All of these teams met together for a final “learning session” on April 3-4, 2012, in St. Louis, MO. The teams are now in their final testing phase and are working on moving from small tests of change to wider implementation.
At the final meeting, the teams split into different breakout sessions focused on various topics, including:
- Improving State Data Collection Systems: CDC and Beyond
- From the Hospital to the Audiologist: Reducing Loss to Follow-up
- Improving Primary Care Engagement with the UNHS System
- Strategies for EffectivelyCommunicating Results and Diagnosis to Parents
- Early Intervention: Closing the Loop
At these breakout sessions, the state teams shared strategies for overcoming similar barriers. Each team shared the successes that they have had in their states and identified areas where they feel they can improve and test the changes suggested by other teams. Here is what two team members had to say:
“This has been one of the most valuable experiences of this type for me. It has taught me how to look at problems through a different "lens;" how to begin tackling issues in a different way. I've learned and am still learning (!!!!) about how to use data to drive changes that are beneficial & identify changes that don’t work.”
“The collaborative was a lot of work, but very valuable in improving the EHDI system. I have started to look at many aspects of my work as small [tests of change].”
While this was the final in-person meeting for these teams, they will continue to work hard on small tests of change and plan for how to sustain the changes after the collaborative project ends. On September 5, 2012, the teams will come together a final time for a Virtual Summary Conference where they will share what they have learned and plans for the future.
For more information about this project, please contact Sarah Donohue-Rolfe at firstname.lastname@example.org.
This project is funded under contract with MCHB (HHSH250201000021C).