We have a distorted perception of medicine. The news we see in the media in most cases are of great medical progress. A new treatment for cancer, a new method for a transplant, a drug that can cure hepatitis, a robot that operates at a distance, etc. That has caused us to have the false conviction that Medicine can work miracles. Without a doubt it can, and the great advances that have taken place in medicine in the last two centuries are unquestionable. But it is also true that most of the medical acts performed in the world are done simply with the clinical judgment of the doctor, with no other help than his experience, his training and his intuition.
This way of performing medicine fortunately works for that vast majority of clinical events in the countries around us. We have one of the best systems of medical training in the university and a program of practices and learning that has been perfected over the years. It is a very solid system for most of the medical needs of citizens.
But when you face a serious illness like a Rare Disease this system finds its limits quickly. When this professional has to face a disease that may have never seen or that has seen few cases, is elusive and does not face all their symptoms, when the treatments are simply symptomatic and of course none of them capable of curing the disease and when the lack of diagnosis is a problem not only for the patient but for the doctor himself, we realize that the system is not designed to respond to these.
How is it possible that in the 21st century the diagnostic process is done manually? There are about 7,000 rare diseases and more than 14,000 symptoms. Do patients really expect their doctor to know how to navigate through all this range of possibilities with only his experience and clinical eye? We take the car to the car repair shop and data on the car key are read and a data collector is connected to our car. In just a few minutes they have more data than we can have on our health. Even the automatic diagnosis system warns of breakdowns, possible problems and suggests solutions. However, we are putting our medical professionals, with years of training, in front of the patients with a computer, which they do not use to get suggestions of new possibilities, but just as a sophisticated typewriter, on which they have to complete hundreds of fields with data that do not help to make better medicine for their patient but are only usted to satisfy the administrative needs of your hospital.
We want our doctors to use their valuable time with their patients, so that instead of looking at the keyboard, they can look them in the face, see how they dress, what they feel and how they tell what happens to them and so that they can think about which treatment is better and if the patient will follow it. Instead of a sophisticated word processor on their computer we want a tool that helps them to make better decisions. For all of this we have done Dx29, with the hope that our professionals can make better medicine with the data.
Rather than empowering patients, we have to re-empower physicians.
Author: Julián Isla is President and Founder of Foundation 29. He is also member of the Orphan Medicines Committee of the European Medicines Agency.
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