Help us teach physicians about organic acidemias
FACT! Teaching about metabolic diseases in medical school and residency programs is poor.
FACT! Most patients live and die without a diagnosis being made, especially when the disease presents in adulthood.
FACT! Patients cannot access effective therapies unless a proper diagnosis is made.
FACT! The sooner a diagnosis is made and treatment begun, the better the outcome.
WE NEED YOUR HELP!
We at VMP Genetics believe in the power of “patient-teaching” and are bringing patients and families into lectures and presentations – at conferences and in the classroom. While doctors teach facts, patients tell stories. Story-telling is a more compelling teaching method with better recall over time than didactic lecturing. We also believe that doctors are more likely to make a diagnosis if they have already seen a patient and heard her/his story. Story-telling can be live or taped…
WE ARE LOOKING FOR…
- Patients and/or family members who are interested in telling their stories in local medical classroom settings… We are developing a Patient Teacher Registry. If a medical school faculty member is looking to introduce the patient story in a teaching session, the Registry can tell him/her if there are patient-speakers in the area and what diagnoses they have.
- Patients and/or family members who are interested in having their stories videotaped… As we secure funding, we are interested in recording stories that reflect the broader patient experience. The more variety in the stories, the richer the learning potential.
- Videos of patients and families telling their stories… A 5-or 10-minute clip can be downloaded into a lecture about that disease or relevant biochemistry to enhance the learning potential of the session.
Please help us in our efforts to raise awareness about Organic Acidemias through this innovative educational outreach to the medical community. For more information about this project… please contact Jacob Athoe at PatientTeacherRegistry@gmail.com
Mark Korson, MD
Jacob Athoe
VMP Genetics, Genetic Counseling Student
Director of Education, Boston University Genetic Counseling Program