From Expert To Patient – Why Medical Knowledge Is Siloed


When you think about how medical knowledge these days comes to existence, then there’s a pretty straighforward – and globally recognized – approach. There is a very tiny group of experts in a very tiny speciality of a speciality. Those are the doctors working at university clinics, who are designing and conducting clinical trials and they are also the ones that come up with the official guildeines for each medical speciality.

These experts are on the forefront of clinical research and evidence based medicine. As an ordinary patient, the chances are low that you’ll ever see any of these doctors, and if so, then it might not be a good sign, since it usually means that your doctor does not have enough information or experience with your specific problem so he needs to refer you to one of his more specialized collegues that deal exactly with your problem.

That top 1% of physicians consists of the opinion leaders, the advisors to pharmaceutical companies and the keynote speakers at top-notch scientific conferences. So this is where medical knowledge is actually being created and from where it’s passed on. Distributed through lectures, guidelines, seminars, webinars and the like, their findings are then being spread to the plethora of physicians, your local gastroenterologist, your local cardiologist – you name it.

From there, knowledge is being spread to primary care physicians who represent the gatekeepers of modern healthcare.  The goal is to make something very complex only a specialist will understand to something practical for the ordinary physician. Every physician wants her “take-home message” at the end of the lecture, so that she knows what’s the best treatment out there when a patient comes in your office.

This workflow is necessary. GPs need to have a good understanding of the entire medical area, whereas the top specialist in pediatric gastroenterology, has to know about a very defined subset of medical knowledge.

But this system leaves out one part of the equation – the patient. A patient suffering from diabetes for 20 years or so knows a lot about her disease. She could probably write a book about what helps and what doesn’t….from evidence-based medicine to herbal therapies. Traditionally, it has been hard for her to share her knowledge. Now, a new epoche has started. These days, the patients have a medium where their knowledge is being shared – it’s called the internet.

Online health forums are a tremendous success and millions of patients discuss amongst each other.Sites like patientslikeme take this knowledge and turn it into something useful for everyone in the healthcare industry – both pharma, the doctor and the patient. But this is just the beginning. Medical knowledge is traditionally being generated without the patient (apart from being subjects in a clinical trial) and yet a vast amount of information lies untapped in the patient-community. Knowledge that could be tremendously useful for us as physicians. Each patient is THE expert on matters relating to her own body.

There needs to be disruption in how medical knowledge is being generated and the patients will likely play an important role in this process. These are exciting times to come!



  1. And what a patient collaborating with the MIT MediaLab had to say about patient knowledge;
    For the past five years Farber has been battling not only her own disease but also
    the wall of resistance erected by those who believe that a patient can
    make about as much of a meaningful contribution to the process of
    scientific discovery as a laboratory rat.


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