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Article

Participatory Workflow Analysis of Newborn Genetic Screening (NBS) to Support Tools for Improved Follow-Up: Comparing the Use Case of Hemoglobinopathy Traits Across U.S. States

by
Peter Taber
1,*,
Jennifer Baysinger
2,
Sierra Daniels
3,4,
Natalie Diaz-Kincaid
5,
Amy Gaviglio
6,
Jacob Ginter
3,7,
Patrice K. Held
8,
Emily Reeves
9,
Virginia Sack
10,
Jennifer Weaver
11 and
Karen Eilbeck
1
1
Department of Biomedical Informatics, University of Utah, Salt Lake City, UT 84115, USA
2
Oklahoma Department of Health, Oklahoma City, OK 73102, USA
3
Iowa Newborn Screening Program, Iowa City, IA 52242, USA
4
Iowa State Hygienic Lab, Ankeny, IA 50023, USA
5
Newborn Screening Program, Division of Disease Control & Health Statistics, Washington State Department of Health, Shoreline, WA 98155, USA
6
Connetics Consulting, LLC, Minneapolis, MN 55417, USA
7
Stead Family Children’s Hospital, Iowa City, IA 52242, USA
8
Oregon State Public Health Laboratory, Oregon Health Authority, Hillsboro, OR 97124, USA
9
Florida Newborn Screening Follow-Up Program, Division of Children’s Medical Services, Tallahassee, FL 32399, USA
10
Newborn Screening Program, Wadsworth Center, New York State Department of Health, Albany, NY 12237, USA
11
Maternal and Child Health Division, Indiana Department of Health, Indianapolis, IN 46204, USA
 
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Author to whom correspondence should be addressed.
Int. J. Neonatal Screen. 2025, 11(2), 40; https://doi.org/10.3390/ijns11020040
Submission received: 3 April 2025 / Revised: 29 April 2025 / Accepted: 6 May 2025 / Published: 20 May 2025
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Abstract

Communication of newborn screening (NBS) results often fails to provide clear explanations of NBS screen results to parents. Understanding existing NBS workflows is vital for improving NBS follow-up. We sought to describe a diverse range of state NBS programs as a starting point for designing tools to improve NBS follow-up, using the example of hemoglobinopathy traits. At a workshop of the 2023 Association of Public Health Laboratories NBS Symposium, participants filled out a survey and modeled their state workflows. Salient features were extracted and synthesized by state. A subset of models was member checked. Representatives from 19 U.S. states participated in the workflow analysis. Mail was overwhelmingly relied upon to convey the results. NBS programs differed by point of first contact with parents and degree of reliance on third parties. A participatory approach is useful for the rapid preliminary documentation of existing NBS program diversity and opportunities and challenges to improve patient education and follow-up. Future work should broaden the analysis to additional entities or individuals, particularly parents and caregivers.
Keywords: newborn screening; workflow analysis; informatics; participatory design; hemoglobinopathy newborn screening; workflow analysis; informatics; participatory design; hemoglobinopathy

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MDPI and ACS Style

Taber, P.; Baysinger, J.; Daniels, S.; Diaz-Kincaid, N.; Gaviglio, A.; Ginter, J.; Held, P.K.; Reeves, E.; Sack, V.; Weaver, J.; et al. Participatory Workflow Analysis of Newborn Genetic Screening (NBS) to Support Tools for Improved Follow-Up: Comparing the Use Case of Hemoglobinopathy Traits Across U.S. States. Int. J. Neonatal Screen. 2025, 11, 40. https://doi.org/10.3390/ijns11020040

AMA Style

Taber P, Baysinger J, Daniels S, Diaz-Kincaid N, Gaviglio A, Ginter J, Held PK, Reeves E, Sack V, Weaver J, et al. Participatory Workflow Analysis of Newborn Genetic Screening (NBS) to Support Tools for Improved Follow-Up: Comparing the Use Case of Hemoglobinopathy Traits Across U.S. States. International Journal of Neonatal Screening. 2025; 11(2):40. https://doi.org/10.3390/ijns11020040

Chicago/Turabian Style

Taber, Peter, Jennifer Baysinger, Sierra Daniels, Natalie Diaz-Kincaid, Amy Gaviglio, Jacob Ginter, Patrice K. Held, Emily Reeves, Virginia Sack, Jennifer Weaver, and et al. 2025. "Participatory Workflow Analysis of Newborn Genetic Screening (NBS) to Support Tools for Improved Follow-Up: Comparing the Use Case of Hemoglobinopathy Traits Across U.S. States" International Journal of Neonatal Screening 11, no. 2: 40. https://doi.org/10.3390/ijns11020040

APA Style

Taber, P., Baysinger, J., Daniels, S., Diaz-Kincaid, N., Gaviglio, A., Ginter, J., Held, P. K., Reeves, E., Sack, V., Weaver, J., & Eilbeck, K. (2025). Participatory Workflow Analysis of Newborn Genetic Screening (NBS) to Support Tools for Improved Follow-Up: Comparing the Use Case of Hemoglobinopathy Traits Across U.S. States. International Journal of Neonatal Screening, 11(2), 40. https://doi.org/10.3390/ijns11020040

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