At one time, patients were a primary source of medical 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 their feelings of isolation. They describe 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 Genetics 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.
This resource is intended for educators and clinicians who want to enhance their teaching about genetic metabolic disorders by including the patient voice and perspective, whether it is a recorded video clip (this site), or a live in-person or remote presentation (see our companion site “National Patient-Teacher Registry”).
There are dozens, perhaps hundreds, of videos by/about patients with metabolic disease in the public domain. They are found on the websites of disease or family foundations, YouTube channels of pharmaceutical companies and other organizations, and in other, sometimes random, locations. They are of varying length and quality, and the educational value of their content may be inconsistent.
This resource is a catalog of the names and locations of existing videos and video clips. The listed videos have all been reviewed and evaluated in a standard way, and a summary note connected with each listing. If they are of decent technical quality, if they have educational value, and if they don’t espouse any incorrect information, they are listed here. How they are incorporated into your teaching is, of course, up to you but know that rarely is a video “educationally complete.” While they convey the patient perspective, the vast majority require additional teaching to educate the viewer about the biochemistry and/or pathophysiology and/or the clinical phenotype and/or other important aspects of the medical condition. Also, most videos are not promotional; however, if they promote a drug or medical device, that is noted in the summary note as well; it is up to you to decide whether or not showing the video is appropriate for your audience.
Please note our list is changing and growing. If a video is not listed here, it is possible that we have not yet discovered it! Please let us know if you know of a video that should be included in our catalog by sending us a message through our Contact page.
Your comments are welcome. VMP Genetics takes seriously the feedback coming from our colleagues and collaborators.
For more information about the VMP Patient Videos Catalog, please go to our Contact page and send us a message. We will respond shortly.
COMING SOON - Online video catalog.
For now if you are an educator please send a request for Patient Videos through our Contact webpage. We will be in contact shortly.