The Duke Endowment Funds 'Genetics Access for All'

12.28.20
The Duke Endowment Funds 'Genetics Access for All'

The Greenwood Genetic Center (GGC), through the Self Regional Healthcare Foundation, has been awarded a grant of $899,000 from The Duke Endowment for ‘Genetics Access for All,’ a project to expand access to genetics services for patients and providers.

“In this current era of genomic medicine, there is an increasing demand for clinical genetics services, but our workforce is insufficient to meet this demand and our current work flows are inefficient,” said Mike Lyons, MD, Director of Clinical Services at GGC and lead on the funded project. “This leads to families facing long waits to be evaluated and tested, and subsequent delays in managing and treating their child’s condition.”

GGC has provided clinical genetics services since 1974; however, with the increase in demand for services, and the inability of genetics training programs to keep up with the ensuing workforce demand, patients often wait for six months or longer to be seen.

“This is not just a GGC issue. Genetics clinics around the country are facing wait times that are as long or longer than ours,” said Steve Skinner, MD, GGC Director. “And we have found that as genomic technology has been evolving at such a rapid pace, many nongenetics providers do not feel comfortable ordering and interpreting genetic tests on their own.”

‘Genetics Access For All’ proposes a new standard of genetics care by optimizing access for patients and employing a new system of communication to transform how nongenetics providers engage with genetics providers in order to better manage their patients.

In 2019, GGC and the Medical University of South Carolina (MUSC) signed an affiliation agreement with the goal of improving access to genetic services for patients across SC. One initiative that has grown out of this affiliation is a pilot project with the MUSC Center for Telehealth to develop an electronic consult (e-consult) system for genetics referrals. The project initially offered the option only to a limited number of referring providers in the MUSC system. Funding from The Duke Endowment will allow that project to expand on a much larger scale.

During the first year of the project, GGC will implement e-consults through an online platform to allow nongenetics providers to upload patient information, and receive clinical impressions and testing recommendations within two business days. E-consults will help avoid unnecessary referrals, improve communication with nongenetics providers, and enhance efficiency by decreasing the amount of time needed for in-person and telemedicine visits.

In year two, GGC plans to expand the concept to provide electronic patient visits (e-visits) allowing patients to upload their information electronically and quickly receive clinical feedback and recommendations. The goal of e-visits is not to replace in-person or telegenetics visits, but to provide another care option that improves communication with and access for patients.

Lyons says that the ultimate goal of this project is to change the model of genetics care from a long diagnostic odyssey to a more efficient system that decreases unnecessary referrals, expedites diagnoses, and decreases wait times for appointments. “Through e-consults, we’ll be able to more quickly identify patients who need genetic testing and facilitate the appropriate testing,” he said. “A rapid diagnosis will allow for more timely and precise management and treatment for all patients impacted by a genetic disorder.”

GGC expects to see significant improvements in patient care as the project expands. “Our goals are to complete 50 outpatient and 25 inpatient e-consults and 25 e-visits per month by the end of the grant cycle,” said Lyons.”We anticipate this project to dramatically improve wait times for all types of visits, and hope that our success can be translated into a new model for genetics care in clinics nationwide.”

Meet The Jones Family

The journey to becoming parents did not start as an easy one for my husband and I. We suffered the heartache of miscarriage and the unimaginable pain of burying our first born child. Our son, sweet 1 lb 1.4 ounce, 12 inches long, teeny, tiny little Joseph “Hamilton” Jones was born with spina bifida, hydrocephalus, and a heart defect. It tore our hearts out leaving the hospital without him, knowing our dreams and hope for the future were shattered....

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