A Survey
BY BETH H. VOGEL, MS, CGC
Have you, your child, or another family member that you care for ever been referred to a genetics specialist?
The New York-Mid-Atlantic Regional Genetics Network (NYMAC), funded by the Health Resources and Services Administration, collaborates with healthcare providers, public health professionals, and patients to identify the needs of individuals living with genetic conditions and to plan activities to address these needs. NYMAC is partnering with Family Health Information Centers in our region on a project to understand the reasons people keep or miss genetics appointments after a referral.
The goal of the survey is to improve access to quality and timely genetics care for people that live in the Mid-Atlantic region by understanding why people keep or miss an appointment with a genetics provider. For example, individuals may not be fully informed about the need for a genetics appointment, the wait list may be too long, or they may have challenges finding transportation to go to the appointment.
To answer this question, NYMAC is distributing a survey to learn more from individuals and parents/guardians of children who have been referred to genetic services. The survey can be taken online until October 12 at: surveygizmo.com/s3/4343291/nyMac1
The survey is open to any person, or parent/guardian, or a child who has ever been referred to a genetics professional, whether or not they scheduled an appointment or attended an appointment. The survey asks questions to understand the person's thoughts after the referral and what would they like to learn or gain from a genetics appointment. For those who have not scheduled or attended an appointment, the survey asks questions about the barriers that could be removed to facilitate access to genetics appointments.
NYMAC will use the results of this survey to create strategies to increase attendance to genetics appointments. Some possible strategies include care coordination assistance like appointment coordinators, additional parent/family support and cultural brokers. Other possible strategies include early connections to Family Health Information Centers, reminders for appointments, and videos about what to expect at a genetics appointment and information about the what to expect at follow-up appointments.
This survey is completely voluntary and will take about 10-20 minutes to complete. The survey is available in English and Spanish. NYMAC serves individuals with genetic conditions living in Delaware, Maryland, New Jersey, New York, Pennsylvania, Virginia, Washington, DC and West Virginia. Although NYMAC is a regional group, the survey is not limited to people living in the region.
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 5 UH7MC30773-02-00, Regional Genetics Networks ($1,800,000). 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.•
ABOUT THE AUTHOR: Beth H. Vogel, MS, CGC is a Project Manager with the New York-MidAtlantic Regional Genetics Network.
ABOUT NYMAC: NYMAC (New York-Mid-Atlantic Regional Genetics Network) is one of seven regional networks in the country funded by the Genetic Services Branch in the Health Resources and Services Administration's (HRSA) Maternal and Child Health Bureau. The NYMAC region includes Delaware, District of Columbia, Maryland, New Jersey, New York, Pennsylvania, Virginia and West Virginia. Individuals from our region with genetic disease and their families, advocates, healthcare professionals and public health professionals collaborate to ensure that individuals with heritable disorders and their families have access to quality care and appropriate genetic expertise. The Wadsworth Center, New York State Department of Health is the lead institution for this project.