Friday, November 10, 2017

Expanding Public Health Genetics

NYMAC's logo.
Last month, we had the opportunity to attend the NYMAC (New York Mid-Atlantic Consortium for Genetics and Newborn Screening Services) steering committee meeting in Washington D.C.
NYMAC is one of seven regional genetics networks in the nation and encompasses seven states: Virginia, West Virginia, Maryland, Delaware, Pennsylvania, New Jersey, and New York, as well as the District of Columbia. These regional genetic networks were established to increase awareness, knowledge, and access of genetic services. Historically, NYMAC has focused on assessing and improving newborn screening in the region’s states as well as other genetic initiatives.

The steering committee meeting focused on NYMAC’s projects for the new grant cycle, which started May of this year. The five main goals of this grant cycle include education, access, telegenetics, quality improvement, and newborn screening. Being new to the organization, it was a great opportunity to see first hand how an organization designs and implements projects.

We covered decision-making plans for metrics and deliverables, discussed how best to implement new technologies, and brainstormed educational priorities for health care providers and patients. There was no better way to get informed, get involved, and get to know our collaborators than to be at the steering committee meeting. Other attendees included a newborn screening nurse, two representatives of different parent-to-parent organizations, medical geneticists, several telehealth consultants, members from the Health Resources and Services Administration (HRSA) and the National Coordinating Center (NCC) for the Regional Genetics Networks, project managers and proposal coordinators, as well as several other professionals. We had the opportunity to speak with leaders in the field, to learn information we didn’t know we didn’t know (such as how to address state licensure issues in telecounseling), and also to contribute our unique perspective to the dialogue around us.

Some of our Pitt Graduate Student workers are helping
NYMAC establish a public health genetics hotline.
As student workers for NYMAC, our primary project is to establish a toll-free phone line that will serve to assist medically under served populations in finding genetic services. We will provide them with a list of clinics in their area and the average wait time for an appointment at these clinics. We will also make appropriate referrals to other outreach organizations if callers have specific questions about a genetic syndrome or if they want to be connected to other families for support. To prepare, we will be updating information on available genetics clinics and outreach sites. We will also be developing lists of “genetic red flags,” or symptoms that should elicit medical attention, organized by age to be used as a reference for both health professionals and patients.

Attending the NYMAC steering committee meeting was a great professional experience for us as current students in the dual degree program (MS in Genetic Counseling and MPH in Public Health Genetics). We are both enthusiastic to help establish the phone line, work with this team of leaders, and to improve the access of genetic services to under served populations in our region.
-- Sarah Brunker, Class of 2019
-- Claire Leifeste, Class of 2018

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