Medical wandering: what if a digital twin came to the rescue of our health problems?

We all know someone who at one time or another has wandered through the health system before getting a clear diagnosis and the appropriate treatment. The most famous case that has come to light in recent weeks is that of Celine Dion and the stiff person syndrome. Even with the best specialists in the world at her disposal, it took several years for the singer to understand what was happening to her. This problem of diagnostic wandering is common, but difficult to quantify precisely. Fortunately, it is recognized and many experts are working to solve it.

Dr. Jean-François Ethier, internist at CHUS and professor at the University of Sherbrooke, is closely interested in this question. It must be said that his specialty is that which involves many complex cases which must be turned over in all directions before being able to fully grasp them.

People who are affected by the problem of diagnostic wandering often have symptoms that affect several organs, several systems of the human body. To put it all together and try to make a coherent story to find the right answer, we often go through internal medicine specialists.

In internal medicine, we see many patients for whom we cannot find a diagnosis and who unfortunately have been in the system for a long time. It is certain that, on a human level, the impacts are very significant.

Causes of diagnostic wandering

Wandering can be explained in several ways, he explains. First, the difficulty of accessing medical resources, a factor regularly criticized in our overloaded public network. Another condition favorable to wandering: an illness which develops very slowly, over the long term. At first, it will be symptoms that are vague and very difficult to link to a diagnosis or that could be compatible with several diagnoses.

The third situation encountered is that the sick person has common symptoms, but which ultimately reveal an unexpected diagnosis. We’ve all been fooled as clinicians. Thinking it’s pneumonia and then finding out it’s inflammation around the lung.he cites as an example.

To complicate matters, there are also what are called rare diseases, sometimes completely unknown to family doctors and difficult to identify by specialist doctors. For Dr. Ethier, it is essential to help front-line workers detect cases that are unfamiliar to them.

In search of its… digital twin

One way to do this is to create a database that allows a patient’s symptoms to be matched with others who have or have had the same symptoms. Dr Ethier talks here about digital twins. A hopeful solution for patients who feel like their case has ended up in the cracks of the floor.

Being able to say: what information about your situation is most important? [Ensuite]we virtually represent you with this information. And we will look at the data set to see if people have a similar representation to yours.

Valuable data to collect

The challenge in creating this digital medical assistant is having access to patient data. They are, for the most part, scattered here and there: in medical clinics, in hospitals, at the occupational therapist or physiotherapist. Even in patients’ smart watches there are cardiac and respiratory data that could prove very useful, he explains.

It is very difficult for someone to quantify their activity when they are in front of a caregiver. If you just had access to your smart watch […] we would have many markers which would allow us, subsequently, to create the digital twin.

Dr. Ethier, who is co-director of the Interdisciplinary Research Group in Health Informatics (GRIIS), dreams of the day when it will be possible to have access to all patient data, to the results of medical research and to cross-reference all this information to assemble the puzzle that allows a diagnosis to be made.

Obviously, the first question with this is to ensure that we have patients’ consent and that it is used safely.

Tools soon to be tested

The day when the digital tool will be available is not far away. A project is already underway at the Charles-Le Moyne Hospital in Longueuil, which is part of the Université de Sherbrooke network. The idea is not to centralize patient data in a single file, but rather to go and get it where it is located.

We hope to be able to deploy these tools on the front lines. Not necessarily to find the final answer, but to be able to detect potential diseases and then be able to refer to the appropriate specialists to confirm or deny that diagnosis.

Dr. Ethier is also eager to see his research team gathered in a few weeks on an entire floor of a new pavilion in the health complex at CHUS-Hôpital Fleurimont. Specialists in medicine, ethics, law and computer science are working to develop digital health technologies that will help make clearer and faster diagnoses.

I think it will allow for even more interesting progress because everyone will be physically there. There will be a lot of people trying to push this kind of issue forward.