Going Full Circle: Closing the Gap Between Parent and Provider
This year, my pilot project through the Genetic Alliance and Baby’s First Test has definitely brought awareness as my presentation / educational session “Going Full Circle” voices. Beginning this journey with nine other task force members in January seemed like an awesome calling; To bring awareness of Newborn Screening to the consumer.
The social media training, the blogging experience, listening to presentations from Sara Copeland from the Health Resources and Services Administration, and presenting a group public comment to the Secretary Advisory Committee of Hereditable Disorders in the Newborn, are just a few examples of me how the task force properly aligned me to prepare to be a network and a resource to the health care community and families.
I have been able to work towards my goal of closing the gap between the provider and the parent. I created an educational session incorporating a pre test survey to assess the knowledge base, an overview of genetics, three evidence based articles, case studies, and a final test. The educational session also presented some very important links for those obtaining their series of newborn screen testing in the state of DE.
Being a part of the 2012 Newborn Consumer Task Force has opened up the opportunity for me to present for the Newborn Screening Advisory Council of DE , assist in the revision of the Newborn Screening Policy at A.I.duPont Childrens Hospital, collaborate with Bethany Hall-Long, PhD, RN a State Representative of DE as well as accept an invitation to be a part of the Interagency Council of DE, an appointed position by the Governor Jack Markell.
The task force members of 2012 can be found at http://www.babysfirsttest.org/newborn-screening/consumer-task-force.
Other essential links to understanding the impact of the changes for Newborn Screening for the consumer as well as resources available for families can be found using the following links:
What conditions are screened for in your state:
Genetics and Family History:
In early 2013, continuing education credits will be offered to all of the facilities that have received the educational session, such as A.I. DuPont Children’s Hospital and Christiana Care Hospital.