Informatics Helps Improve Services for People with Rare Genetic Disorders
The Task Force’s Public Health Informatics Institute (PHII) is teaming up with Emory University to improve services for patients with metabolic disorders.
People with these rare genetic conditions often have complex healthcare needs and individualized dietary requirements that can be challenging for healthcare providers to manage in an optimal manner.
In response to growing demand for their services, Emory’s Department of Human Genetics and the Metabolic Nutrition Program asked PHII to design a health information system that streamlines multiple sources of electronic and paper-based information about patient outcomes.
“Providers need access to the highest quality patient data,” said PHII Business Analyst Sheereen Brown, MS, who is the project lead. “We’re helping design a health information system that will ultimately help improve services for these patients.”
People with metabolic disorders are unable to digest protein correctly. The new health information system will enable providers to manage their patients’ overall healthcare needs in a more efficient manner, including specialized food and formulas prescribed for patients. The system will also be used to support insurance navigation and additional benefits for uninsured and underinsured patients.
Emory supports patients with metabolic disorders through a special program called Medical Nutrition Therapy for Prevention for Inherited Metabolic Disorders or MNT4P.
“PHII’s specialized technical expertise with business requirements methodology makes them an ideal partner,” said MNT4P Project Manager Mary Lauren Salvatore, MPH, CHES, a public health program associate in the Department of Human Genetics. “They have helped us understand our information needs and are designing a system that will give us the capacity to serve more patients in the future.”
MNT4P is the only program in Georgia for people with metabolic disorders. It is funded by the Georgia Department of Public Health.