Toward a coherent structuration of disorders of consciousness expertise at a country scale: A proposal for France

Probing consciousness and cognitive abilities in non-communicating patients is one of the most challenging diagnostic issues. A fast growing medical and scientific literature explores the various facets of this challenge, often coined under the generic expression of 'Disorders of Consciousness' (DoC). Crucially, a set of independent converging results demonstrated both (1) the diagnostic and prognostic importance of this expertise, and (2) the need to combine behavioural measures with brain structure and activity data to improve diagnostic and prognostication accuracy as well as potential therapeutic intervention. Thus, probing consciousness in DoC patients appears as a crucial activity rich of human, medical, economic and ethical consequences, but this activity needs to be organized in order to offer this expertise to each concerned patient. More precisely, diagnosis of consciousness differs in difficulty across patients: while a minimal set of data can be sufficient to reach a confident result, some patients need a higher level of expertise that relies on additional behavioural and brain activity and brain structure measures. In order to enable this service on a systematic mode, we present two complementary proposals in the present article. First, we sketch a structuration of DoC expertise at a country-scale, namely France. More precisely, we suggest that a 2-tiers network composed of local (Tier-1) and regional (Tier-2) centers backed by distant electronic databases and algorithmic centers could optimally enable the systematic implementation of DoC expertise in France. Second, we propose to create a national common register of DoC patients in order to better monitor this activity, to improve its performance on the basis of nation-wide collected evidence, and to promote rational decision-making.