NEGC Grantee Utilizing Individuals with Metabolic Conditions as Educators

For many years, North America has experienced a shortage of metabolic physicians and young doctors who choose to train in the metabolic subspecialty. As advances are made in understanding various genetic conditions, non-genetic clinicians encountering and managing metabolic diagnoses often lack the latest information. This sometimes leads to communicating potentially alarming medical and informational inaccuracies to patients and parents about future metabolic issues that they or their child may experience.

A new educational project by the Medical Outreach Service of Tufts-New England Medical Center addresses the issue in New England. The Patient-As-Teacher Project, funded through a grant from the New England Genetics Collaborative's (NEGC) Innovative Small Projects Program, utilizes the experiences of patients with metabolic disorders and/or family members to serve as an educational resource for non-genetic medical providers and medical students. Patients and family members provide valuable first hand insight by presenting their perspectives on living with the disorder, their diagnostic journey, and their encounters with the health care system.

The Patient-As-Teacher Project is building a library of resources across a diverse set of metabolic conditions by creating a speaker registry and putting the people who experience these conditions at center stage. To date, the project has recruited over 25 future speakers.

"For physicians who must learn about hundreds of conditions in order to keep pace with the rapidly changing field, the opportunity to put a face and a story with a genetic condition is invaluable," says Susan Waisbren, Ph.D., Psychologist for the Metabolism Program at Children's Hospital Boston and the Patient-As-Teacher Project's endorsing member of the NEGC's Collaborative Council.

The project also hopes to encourage medical students' interest in the metabolic field as a career choice, eventually alleviating the current shortage of metabolic physicians.

The Patient-As-Teacher Project reapplied for and has received additional Innovative Small Projects funding for the 2009 fiscal year to continue its important work.

For more information on the NEGC and the Innovative Small Projects Program, visit www.negenetics.org.