Standardization in Newborn Screening Communication€¦ · Resources for Responding to a Shifting...
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Standardization in Newborn Screening Communication: April 7, 2019 Annie Evans, MPH Program Development Specialist Genetic Alliance Resources for Responding to a Shifting Landscape
Standardization in Newborn Screening Communication€¦ · Resources for Responding to a Shifting Landscape. Who We Are . But first… Baby’s First Test brings together the latest
Standardization in Newborn Screening Communication:
April 7, 2019
Annie Evans, MPHProgram Development SpecialistGenetic Alliance
Resources for Responding to a Shifting Landscape
Who We Are
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But first…
Baby’s First Test brings together the latest information and resources to help guide parents, families, loved ones, and their
health professionals throughout the newborn screening process.
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Is a national newborn screening resource Vision: to work towards every family and HCP having the info they need to navigate the NBS system
BabysFirstTest.orgLearn, Connect, Share
Educational Resources
Interactive Map
Public Square
Family Experiences
Social Media
Education Support
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A few methods Highlight both family and professional perspectives through website and programming Find our resources – can order directly from us Interactive map of conditions Families and professionals can share their voices on our public square and family experiences pages Reach out via social media – meet people where they are
What Can You Do?
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3 things BFT has developed to help w/ moving towards having all stakeholders use and understand the same language I will talk about…. 2 docs developed with a work group of experts from states 1 framework developed with a group of experts across health fields Multiple abstracts combined, lots of info in one presentation
*Photo for demonstration purposes only
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I’m going to illustrate the first issue with a story. The names and photos I’m using have been changed but the story is real This is Mei. Mei’s NBS results indicated that she was at risk for a condition. Mei’s healthcare provider immediately called her parents and informed them that they needed to go for confirmatory testing. When they arrived for further testing, they were asked “Are you the family that’s here for the PKU test?”. At their HCP appointment, they were surprised to find that Mei was not at risk for PKU, but was actually at risk for an entirely different condition. The family had spent a lot of time researching PKU so the health provider had to spend valuable additional time and resources re-educating this family and building trust with them.
Newborn Screening: More Than a PKU
Screen
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First up Guidance on switching healthcare provider language from “the PKU test” to “newborn screening”
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Need CONSISTENT use of “newborn screening” across public facing communications Healthcare providers may not even realize this is an issue. People will tell you that they don’t use this term before but I can’t tell you the number of people who have come up to the Baby’s First Test booth at other conferences and asked “oh is this the PKU test?” Looking at the document, a few essential components (Venn Diagram) Heels, hearts, hearing – an easy earworm to help health providers remember the 3 components We know from a previous focus group we’ve done that providers like to have documents with mnemonic devices like this Puns truly are the highest form of literature Statistics are customizable A family story illustrating the real consequences + impact on families
23%
96%
Called newborn screening “the PKU Test” before reading the document
Recognized the importance of shifting language to newborn screening
Thought the document would be useful for their hospital73%
Michigan Beta Testing Results
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Beta testing with Michigan (Kristen Thompson and Mary Kleyn) Provided doc and presentation on this to 64 nurse coordinators, then gave them a 3 question survey Before seeing this handout, did you call newborn screening “the PKU test”? 23% After reading this handout, do you recognize the importance of refraining from calling newborn screening “the PKU test”? 96% Do you think this “More than a PKU Screen” handout would be useful for healthcare providers who collect the newborn screen in your hospital? 73%
PrecontemplationUnaware of issue with the term "the PKU test"
ContemplationUnderstands the consequences of using the term “the PKU test”
PreparationTalking to a supervisor about changing the term
ActionBeginning to incorporate the term "newborn screening" instead of "the PKU test"
MaintenancePermanently shifting to the term “newborn screening
Transtheoretical model of stages of behavior change – methodology of document 5 stages and you can enter and exit this process at any point Precontemplation – you don’t even know that something is an issue - This is where many people are now Contemplation – know its an issue and thinking about changing in the next 6 months - This is where we move people using the doc Preparation – setting up to actually change behavior Action – implementing behavior change Maintenance – making a shift to maintain the behavior change over a long period of time, takes 1-5 years This takes you from precontemplation to contemplation
Transtheoretical model of stages of behavior change – methodology of document Precontemplation – you don’t even know that something is an issue - This is where many people are now Contemplation – know its an issue and thinking about changing in the next 6 months - This is where we move people using the doc Preparation – setting up to actually change behavior Action – implementing behavior change Maintenance – making a shift to maintain the behavior change over a long period of time, takes 1-5 years and you can enter and exit this process
Disseminate the document to healthcare professionals Use posters in break rooms Present in trainings Partner with provider education programs at universities
Baby’s First Test can provide support!
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Come from state workgroup and BFT experience
*Photo for demonstration purposes only
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Another scenario The names and photos I’m using have been changed but the story are real This is a scenario we see all the time through the Baby's First Test Ask an Expert form. We get a lot of questions from parents and providers asking what different results mean for different conditions. They don’t have a reference on the results sheet to understand and they don’t know where to turn for more information or how to communicate it.
Recommendations for Plain Language
Newborn Screening Results
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2nd doc
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Need to make reports easier to read and understand. Providers see families from multiple hospitals or states. Families don’t always have kids in the same state. Even if they have experience from one state or area, it may be different. The more we move towards similar elements, the easier it will be for them to get the information they need quickly Recognize that reporting software/legislature is sometimes very difficult to change and may take a really long time or not happen all at once. You must be strategic about how you advocate to make these changes so the reports are understandable to families,
• Concisely and simply summarize results• Highlight key information
Summarize the Results
• Use plain language• Include a disclaimer about false negatives
Language Recommendations
• Avoid implying that results are diagnostic• Stress follow-upRisk Terminology
• Place important points at the beginning • Use charts and visualsDesign
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These principles are for anytime you are communicating about results, not just for lab results Primary message: action items should be very obvious 4 main points: Summarize results b/c hard for parents to pick out of reports Use plain language, BFT + software care help Use risk terminology Where the group landed after some discussion because this is a screen not a test, it shows risk Use design to highlight main points, like a table to pull out essential results
Condition Analyte Results
Galactosemia Gal-1-Phosphate Uridyl Transferase
HIGH RISK OF CONDITION
Cystic Fibrosis ImmunoreactiveTrypsinogen
Low Risk of Condition
Primary Congenital Hypothyroidism
Thyroid Stimulating Hormone
Low Risk of Condition
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Example of a design element you can use to organize info so it is easy to pick out Adding a table like this helps to highlight the important info
Address during regulations changes Address during process updates Make text edits where possible
Strategies for Implementation
Baby’s First Test can provide support!
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Leverage updates and changes to regulations or systems, when changes may already be implemented. Advocate Sometimes reports are very hard to format differently, text edits can be helpful if nothing else is workable Sometimes recommendations are hard to get through without help from someone outside who is viewed as an expert.
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Moving to our last issue. I want to talk about how NBS education impacts the public. The larger public is being exposed to many different messages through articles like these.
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Conversations are happing about NBS on the national and local level. They may not come to the health department with these questions, but they may be talking about them online or going to their HCP. Education can help make things clearer for them
Newborn Screening
Education Best Practice
Framework
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Final resource for today’s presentation Need identified through the BFT Beyond the Bloodspot Summit. There was no resource available to help educators identify best practices in an NBS context specifically Moving towards consistent use of best practices in NBS including what is considered a best practice and implementation of best practices across the nation
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Guiding questions is step one in application Pick an education approach you’d like to use, and answer the questions. use the answers to guide you through the next step Focus on clearly defining the context of issue you want to resolve and how the approach will be used Centers conversation on audience needs
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Use the answers from the guiding questions to move through the framework. Reading from left to right, as you move through you will pass checkpoints with questions to help you evaluate whether the education approach you selected may be a best practice Special considerations to the goal, the context of the issue itself, the audience, and practical considerations for implementation in NBS Promotes sharing strategies for success that create harmonization and maximize limited education resources For info on how states have used this specifically, come by our booth
How Can We Help?
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Maybe you’re feeling like this is a lot of work, and you’re right. Education is a continual process and requires a proactive, data-driven approach, particularly in such a nuanced topic as newborn screening
Available Support and ResourcesBaby’s First Test Offers Assistance and Partnership
Design and Tailor Education Materials
Build Strategic Education and Training Plans
Engage Communities and Professionals
Support Implementation of NBS Education Best Practices Framework
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But there is good news! You are not alone in this BFT does provide technical assistance and partnership. This is a sampling of what we have done in the past but come talk to us if you have questions and we can talk about what we can do for you in a range of different situations
Thank You!
NAME STATEAmy Gaviglio MinnesotaJoyal Meyer North DakotaMarie Burlette ConnecticutPatti Constant MinnesotaKristen Thompson MichiganTami Horzewski WisconsinSondi Aponte ArizonaSylvia Mann Hawai’iShannon Harrison IllinoisErin Bonzon Washington, DCLisa Shook OhioAshley Comer IowaKaren Eveans NebraskaDeborah Rodriguez
New York
Emily Philips IowaHeather Pint Minnesota
NAME ORGANIZATIONAaron Goldenberg Case Western Reserve
UniversityKeri Leblanc California Newborn
Screening ProgramScott Shone RTI InternationalAmy Gaviglio Minnesota Department
of HealthDebra Freedenberg
Texas Department of State Health Services
Jeremy Penn The College of Education, University of Iowa
Carol Johnson University of IowaBeth Vogel New York State
Department of HealthSiobhan Dolan Albert Einstein College of
Medicine
State Workgroup Best Practices Workgroup
The Baby’s First Test Team
Natasha Bonhomme and Jackie Seisman
Michigan Beta Testing Team
Kristen Thompson and Mary Kleyn
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Thanks to WGs + MI for all their valuable input and perspectives
