Qhen Tim Berners-Lee invented the World Wide Web to facilitate the exchange of scientific documentation, he perhaps had no idea that his discovery would benefit anyone curious to push their knowledge into the field of their choice. By revolutionizing access to information, he shared erudition, disrupting authority relations based on knowledge.
This is particularly the case in the medical field, where the “expert” patient has come to break the exclusivity of scientific knowledge, hitherto conferred on the practitioner, opening the way to an enriched therapeutic dialogue. If well supported, this increase in patient skills can become a powerful lever for compensating a public health system on the verge of breakdown, because it is structurally lacking in medical and financial resources.
This can be demonstrated through Parkinson’s disease where, as with other pathologies, the patient’s voice gains volume. Parkinson’s disease is not new. Described by Sir James Parkinson in 1817 and named by Charcot after its inventor, it has mobilized the neurons of researchers for several generations. Most of the major questions about its causalities (genetic, environmental, etc.), its triggering and propagation mechanisms but also, consequently, those about the means to slow it down, block it and cure it, remain open.
The effectiveness of treatment depends on multiple factors
For a long time, largely supported by public or industrial funds, medical research has seen its funding by patients increase very significantly in recent years. Patients, supported by emblematic personalities who created their own philanthropic foundation (Michael J. Fox Foundation, Van Andel Institute, Cure Parkinson’s, etc.), have gradually moved from the role of simple funders to that of scientific partners, guiding the choice research topics based on their understanding of patient interest.
A contribution that is all the more necessary as it is complementary, because it primarily funds fundamental research before handing over to the pharmaceutical industry for clinical research and drug development, with the scientific committees responsible for choosing the subjects to be investigated welcoming still too few sick people among them. Their ideas could, however, be very useful to them, like those put forward by Guillaume Brachet, who, suffering from Parkinson’s, will file a patent for a treatment against the disease, or by Djamchid Dalili, creator of an application which could allow to measure the evolution of symptoms linked to the disease and to objectively monitor them.
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