Importance of Diversity , Equity & Inclusion Across the Newborn Screening Spectrum
by Oluwafunke Akinsola , senior specialist , Newborn Screening & Genetics ; Erin Darby , senior specialist , Newborn Screening & Genetics ; Hiral Desai , specialist , Bioinformatics ; Sari Edelman , senior specialist , NewSTEPs ; Kshea Hale , senior specialist , Newborn Screening & Genetics ; Chenelle Norman , manager , NBS & G Quality Improvement ; Jelili Ojodu , director , Newborn Screening & Genetics ; Trey Pigg , senior specialist , NewSTEPs ; Dara Plath , associate specialist , Newborn Screening & Genetics ; Ruthanne Sheller , senior specialist , NewSTEPs ; Sikha Singh , deputy director , Newborn Screening & Genetics Operations ; Kayana Walters , specialist , Newborn Screening Quality Improvement ; Careema Yusuf , manager , NewSTEPs ; Guisou Zarbalian , manager , Newborn Screening & Genetics
Newborn screening ( NBS ) is more than a test — it is a system . This system is responsible for screening more than four million babies each year in the United States for certain genetic disorders . As one of the most successful public health systems , NBS improves and saves the lives of over 12,000 babies annually . Because NBS is a state mandated service , equity and inclusion may seem inherent . However , to ensure the continuity of services in an ever-changing environment and to sustain its mission , the NBS system must represent all babies it serves , regardless of race or socioeconomic status . A diverse , equitable and inclusive system ensures that every baby receives the same high-quality care .
As a part of this NBS system , APHL understands the importance of diversity , equity and inclusion ( DEI ) across the newborn screening spectrum . Incorporating DEI internally as a program as well as externally allows for different voices and ways of thinking to come together and create approaches to better support and enhance the NBS system . This is reflective of the work produced through collaboration with the diverse group of newborn screening stakeholders and the diverse team at APHL , various NBS funding streams , and approaches to NBS data collection and analysis . The system works best for the babies it serves when all voices are heard .
Diversity in Newborn Screening Stakeholders
The NBS system relies on a diverse group of stakeholders including laboratorians , follow-up personnel , vendors , policy makers , physicians , nurses , genetic counselors , families and advocacy groups . Through its Newborn Screening & Genetics Program as well as the
Funding from the US Centers for Disease Control and Prevention
( CDC ) and the Health Resources and Services Administration
( HRSA ) enables APHL to provide opportunities for stakeholders to connect and collaborate by hosting dozens of national meetings and webinars , trainings , workgroups and committees where participants can discuss the status of NBS and strategies to address changes and emerging needs in the field . One of most powerful NBS events each year takes place at the annual Newborn Screening Symposium where patients , parents and families living with NBS conditions share their experiences interacting with the NBS system . By encouraging representative stakeholder engagement , APHL hopes to inspire meaningful dialogue around improvements to the NBS system .
APHL further encourages all NBS program staff to participate in these forums so that individuals from bench-level to management have the chance to learn and exchange ideas . Ensuring that all partners have a voice is vital to addressing the challenges faced by NBS programs .
Improving Quality to Foster Equity
Over the years in response to member needs , APHL has continued to adapt and create innovative approaches to facilitate discussions and develop NBS resources . APHL now offers educational support and technical assistance related to bioinformatics , data analytics , epidemiology , health information technology ( HIT ), molecular testing , quality assurance and control , follow-up , policy and legislative matters , disorder-specific initiatives , continuous quality improvement ( CQI ) and more .
The NewSTEPs CQI program , funded through a cooperative agreement from HRSA , champions a continuous improvement culture across NBS , including new disorders , timeliness and follow-up . Encouraging a culture of continuous improvement is accomplished by challenging the status quo and through the promotion of innovative ideas . Essential to this effort is understanding the importance of bringing together members of the NBS community — individuals of diverse thought , backgrounds and experiences — to inspire improvement and innovation . The collaborative design of QI projects has resulted in an increase in cross-learning between NBS programs and stakeholders that may not have communicated in the past .
The CQI program also conducts direct outreach to all US state and territorial NBS programs on a quarterly basis to stay connected to each program ’ s unique needs , ensuring that all programs receive fair and equitable access to APHL NBS services and resources . Providing a platform for diverse voices to exchange knowledge has been critical to the success of QI projects and in supporting the various improvement initiatives that aim to improve health outcomes and improve care delivery for newborns .
NBS Data Collection and Analysis to Strengthen Inclusion
DEI is vital in data collection and analysis . Every NBS program is different , with unique populations they screen for and unique screening challenges . Some NBS programs screen for different conditions , in part to address the racial and ethnic makeup of their populations . Data help
22 LAB MATTERS Spring 2021