At one time, patients were a primary source of learning. Sir William Osler wrote in the 19th century, “To study the phenomena of disease without books is to sail an uncharted sea, whilst to study books without patients is not to go to sea at all…”
Since the 1970s and with the expansion of technology, most clinical teaching moved into the conference room. This is unfortunate because patients and their family members can be highly effective teachers. They talk about symptoms, their diagnostic odysseys, about living with their diseases, and about feeling isolated. They recall the challenges of navigating a complex medical system. Whereas doctors lecture about facts and describe clinical cases, patients and families have lived an often-poignant narrative, and the research is clear - storytelling is a very effective teaching tool. People remember stories better than they do facts.
VMP believes that clinicians are more likely to recognize a patient with a metabolic disorder if they have already seen or heard about such a case before.
A CATALOG OF VIDEO LINKS OF METABOLIC PATIENTS OR FAMILY MEMBERS TELLING THEIR STORIES
The Patient-Teacher Registry provides an opportunity to invite patients with genetic metabolic diseases and/or their family members into the classroom. However, sometimes, an educator does not have the opportunity to insert a 30-60-minute patient presentation into the curriculum. Fortunately, there exist in the public domain many short videos, developed by disease foundations, health care institutions, pharmaceutical companies, and/or other organizations, in which the patient (and/or caregiver) story has been filmed and recorded. These clips can be downloaded from their original location into any lecture or seminar, thereby enhancing the quality of the presentation because the patient experience is included.
The Catalog of Metabolic Disease Video Links is an expanding resource that lists what videos of educational value about inborn errors of metabolism are currently in the public domain. For each video clip, in addition to the title and the link to the source of the video, a summary details useful educational and technical information about the video, so educators are able to choose which video(s) better serve their teaching needs. When a video includes promotional information about an organization, institution, or drug/device, this is also noted in the summary as well.
Please note, the users of this catalog assume any and all risks associated with accessing and clicking on the links contained in the catalog. VMP makes no representation to the link's security.
VMP hopes this catalog will help to promote awareness about genetic metabolic diseases in the medical and health care community.
Your comments are welcome. VMP takes seriously the feedback coming from our colleagues and collaborators.