Moving Toward Best Practices in Newborn Screening Education & Engagement

Moving Toward Best Practices in Newborn Screening Education & Engagement

Public Square #05Published June 05, 2017
The Prompt: 

On June 5-6, 2017 in Washington, DC,  families, health professsionals, newborn screening and public professionals, and health educators (to name a few) gathered together for the Beyond the Bloodspot: Education and Engagement Summit. The goal of this summit was to: 1) identify and evaluate best practices that improve family and healthcare provider understanding of the system; 2) identify best practices that increase family and healthcare provider involvement in the newborn screening system; and 3) evaluate family and health care provider involvement in the newborn screening system.

While this summit was only a starting point in gathering potential best practices and understanding the challenges toward creating these best practices, we want to hear from you! How can we move toward best practices in newborn screening education and engagement?

Goals of the Summit:

  • Identify and evaluate best practices that improve family and healthcare provider understanding of the newborn screening system
  • Identify best practices that increase family and healthcare provider involvement in the newborn screening system
  • Evaluate family and health care provider involvement in the newborn screening system
- See more at: http://babysfirsttest.org/newborn-screening/beyond-the-bloodspot-summit#sthash.3UG3dUmA.dpuf

Goals of the Summit:

  • Identify and evaluate best practices that improve family and healthcare provider understanding of the newborn screening system
  • Identify best practices that increase family and healthcare provider involvement in the newborn screening system
  • Evaluate family and health care provider involvement in the newborn screening system
- See more at: http://babysfirsttest.org/newborn-screening/beyond-the-bloodspot-summit#sthash.3UG3dUmA.dpuf
4 comments
The Question: 
How can we move toward best practices in education and engagement?
The Question: 
How can we move toward best practices in education and engagement?
Join the conversation. Share your thoughts.
FLAG
Jaclyn Seisman, MPH Program Manager, Expecting Health at Genetic Alliance

Welcome to the Newborn Screening Public Square! I am the Assistant Director of Baby's First Test, and I will be the moderator for this public square event. We are looking forward to an interesting and engaging discussion about best practices in newborn screening education.

FLAG
Stacy Hines-Dowell

There should be a way for us to compile best practices used in NBS education and place in a central location like BFT!

FLAG
Amy Gaviglio

It is so wonderful that we were able to get together and talk about best practices and hold ourselves more accountable to using education and communication models to help guide newborn screening resources. It would be great for BFT to build upon the clearinghouse in a way that helps guide organizations to assess their materials and provide guidance on where resources may fall in the continuum of best practices. Let's address those Education Elephants; ask the hard questions; and make the process better!

FLAG
Iqbal Mai

A public forum like this was long over due. There are lot genetic conditions which lack expert links for the public to get the correct information. I am hopeful that families will be able to get the information which will help in making the right decisions at the right time.
This is a wonderful resource of genetic conditions in the new born.

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