Short Term Follow-Up Stakeholders Meeting Agenda
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1 Short Term Follow-Up Stakeholders Meeting Agenda May 17-18, 2018 Bethesda North Marriott Hotel & Conference Center 5701 Marinelli Rd Rockville, MD 20852
2 This meeting is sponsored by the Association of Public Health Laboratories About NewSTEPs NewSTEPs (Newborn Screening Technical assistance and Evaluation Program) is a program of the Association of Public Health Laboratories in collaboration with the Colorado School of Public Health. It is a national newborn screening program designed to provide data, technical assistance, and training to newborn screening programs across the country and to assist states with quality improvement initiatives. NewSTEPs is a comprehensive resource center for state newborn screening programs and stakeholders. Consent to Use Photographic Images Registration and attendance at or participation in APHL Meetings and other activities constitutes an agreement by the registrant to APHL s use and distribution (both now and in the future) of the registrant s or attendee s image or voice, without compensation, in photographs, videotapes, electronic reproductions and audiotapes of such events and activities. This project is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under grant number # U22MC24078 for $950,000. This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government.
3 GROUND BACKGROUND PURPOSE A critical component to the success of all newborn screening systems is ensuring that all infants receive appropriate testing and care. Short Term Follow-Up entails the process of ensuring that all newborns are screened, that an appropriate follow-up caregiver is informed of results, that confirmatory testing has been completed, that the newborn has received a diagnosis and, if necessary, treatment. PURPOSE OBJECTIVES The purpose of this national meeting is to convene newborn screening personnel involved with short- and long-term follow-up under the leadership of the NewSTEPs Short Term Follow-Up Workgroup. Participants will share solutions for short- and long- term follow-up newborn screening. CONTACT OBJECTIVES 1. Provide input, guidance and technical assistance on follow-up in Newborn Screening 2. Identify needs and offer technical assistance related to molecular literacy in short term follow-up 3. Provide an arena in which follow-up staff can network and collaborate on quality improvement efforts CONTACT Erin Darby, MPH, MCHES Specialist, NewSTEPs erin.darby@aphl.org Phone:
4 DAY 1 AGENDA Thursday, May 17 8:30 9:00 am 9:00 10:00 am Arrival/Breakfast Welcome and Introductions (Brookside A&B) Jelili Ojodu, Association of Public Health Laboratories (APHL) Andrea Matthews, Health Resources and Services Administration (HRSA) Meeting Overview and Ice Breaker: John Thompson and Carol Johnson John Thompson, Washington Newborn Screening Program Director Carol Johnson, Iowa Newborn Screening Follow-Up Coordinator 10:00 11:00 am 11:00 am 12:00 pm 12:00 1:00 pm 1:00 3:00 pm 3:00 3:15 pm 3:15 5:00 pm 5:00 pm Education: External (Brookside A&B) Natasha Bonhomme, Baby s First Test Educating providers, families, and legislators Existing educational tools Needs assessment/gap analysis Education: Internal (Brookside A&B) State Spotlights Sharing Family Stories Sondi Aponte & Fran Altmaier, Arizona Integrating Lab and Follow-Up Staff Christen Crews, Virginia Hospital Staff Education Programs Ashley Comer, Iowa Lunch (provided) Be Prepared! Skill Building Break Out Sessions Pick 2 Emergency Planning: Continuity of Operations (COOP) (Middlebrook) Christen Crews, Virginia, & Jelili Ojodu, NewSTEPs Attendees will discuss topics such as continuity of operations, finding a family in a disaster, and including your program in state emergency planning Stakeholder Education (Brookside A&B) Amy Gaviglio, Minnesota, & John Thompson, Washington Attendees will discuss topics such as teaching others how follow-up works, facilitating discussions about needed resources, ensuring adequate resources for full staffing, and working with families, family advocates, and legislators Preparing your Elevator Pitch (Timberlawn) Yvonne Kellar-Guenther, NewSTEPs, & Carol Johnson, Iowa Attendees will develop an elevator pitch for their program, prepare talking points, and learn how to promote short-term follow-up Break Creating Program Standards and Systems Panel Discussion (Brookside A&B) Sara Denniston, Oregon - Standard Operating Procedures & Cross Training Cindy Ingham, Vermont - Succession Planning Joyal Meyer, North Dakota - Hiring: Barriers and Successes Sarah Bradley, New York - Shadowing Programs Day 1 Adjourn
5 DAY 2 AGENDA Friday, May 18 8:30 9:00 am 9:00 10:00 am 10:00 am 12:00 pm 12:00 1:30 pm 1:30 2:00 pm 2:00 pm Breakfast Welcome Meet Me for 3 (Brookside A&B) Speed Meeting Icebreaker and Networking Activity Choose Your Own Adventure! Roundtable Discussions Pick 2 Molecular Literacy (Brookside A&B: 10am-11am & 11am-12pm) John Thompson, Washington Attendees will explore what resources are available for training follow-up staff in molecular techniques and interpretation of genetic testing results and identify what technical support is needed in the community Laboratory Information Management System (LIMS) User Groups (Forest Glen: 10am-11am) Attendees will break out by user group (Neometrics, PerkinElmer, and other vendors or home-brew systems) to share how they use the systems to accomplish their daily work and program goals Size Matters: Program Size Challenges & Successes (Forest Glen: 11am-12pm) Attendees will break out into groups based on program size to discuss challenges of small, medium, and large programs o Small: Linda Kincaid, New Hampshire & Sarah Groeneveld, South Dakota o Medium: Mary Kleyn, Michigan o Large: Robin Thomas, California, & Dusty Edwards, Florida Working Lunch Lessons Learned What s Next? John Thompson and Carol Johnson Wrap Up and Action Items Meeting Adjourn
6 VENUE MAP Bethesda North Marriott Hotel & Conference Center
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States Ranked by November 2015 Unemployment Rate Seasonally Adjusted Unemployment Unemployment Unemployment 1 North Dakota 2.7 19 Indiana 4.4 37 Georgia 5.6 2 Nebraska 2.9 20 Ohio 4.5 37 Tennessee 5.6
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