Round tables > Synthesis n°2

Steven Macari is a patient trained in Therapeutic Patient Education, and involved in many associations and networks dedicated to heart failure. He sees an increasing professionalization of expert patients, who used to act as volunteers, and now have to master many subjects: communication, community management, accounting, content creation, law, pedagogy, clinical trials, etc. Expert patients are already involved in research, education, and setting guidelines for heart failure management. It invites us to consider patients, not at the center of the health system, but as full-fledged actors and stakeholders of the system.

Thierry Ménissier is a professor of political philosophy. Since 2012, he is holding a "human sciences and innovation" position at the Institut d'Administration des Entreprises (IAE) in Grenoble. He is also in charge of a chair at the MIAI (Multidisciplinary Institute of Artificial Intelligence), whose objective is to understand the psycho-social, moral and political stakes of the deployment of artificial intelligence (AI) in a multi-disciplinary and multi-actor framework (including informed citizens). This chair is entitled "Ethics and AI" and not "Ethics of AI". Indeed, there is no definitive answer, nor is there a single methodology to address these issues. On the contrary, we can distinguish four types of dominant discourses in the field of AI: computer ethics (which consists in implementing ethical principles in computer code), artificial ethics (which is interested in the interactions between humans and artificial agents), digital ethics (which deals in particular with the issue of personal data) and UX AI ethics (which relies on the co-design of the uses of technologies). It invites us to think beyond utilitarian ethics, and to define a theory of values with the different stakeholders, based on an ethics of deliberation (Jürgen Habermas), and an ethics of capabilities (Martha C Nussbaum).

Hervé Michel is the director of the MADoPA association (Expert Center for Technologies and Services for the Home Care of the Elderly). In 2018, he coordinated a collective summary book on co-creation and evaluation methods for silver-technologies: L'avenir des Silver Tech (The future of Silver Tech - Presses de l'EHESP). MADoPA is a nomadic Living Lab, which uses a socio-anthropological approach to study the uses of digital health technologies in real-life situations. The goal is to understand the diversity of patients (including the less visible ones) in their ecosystem. In particular, the MADoPA team is interested in the conditions of health generation (salutogenesis, as opposed to pathogenesis: conditions of disease onset), by identifying the logics of action that carry the users in their daily lives, and allow them to give meaning to their lives. Through this work with users, they seek to give them a place as full-fledged actors in health innovation projects.

Véronique Chirié is the director of the TASDA association (Technopôle Alpes Santé-à-Domicile et Autonomie). TASDA has three main missions. The first is to evaluate in the field digital innovations proposed by the market in order to help manufacturers to develop their product or to accompany its deployment. The second mission is to create, experiment and modalize new services, such as that of accompanying pairs of care recipient/caregiver in order to help them find arrangements that respect the choices of each. Finally, the third mission consists of changing the way professionals operate, by integrating technology into their business practices. In particular, she cites a project aimed at providing information captured by the caregivers in order to prevent a deterioration in the patient's state of health.

Discussions then focused on the possibility of moving away from a techno-centric approach to technology and achieving a true co-design involving all stakeholders. According to Raphaël Koster from MADoPA, the questions of acceptability and taking into account the realities on the ground often come late in the technological development process. He describes the typical presentation of the student projects he has to evaluate: 1) statistics: everyone dies; 2) we can save their lives with our technology; 3) budget and schedule. The question of the uses comes only afterwards: there is thus from the beginning of the project a delay to catch up. Thierry Ménissier joins this observation. The IAE being attached to Grenoble INP, it was requested to give a training on ethics to the engineering students. Rather than a lecture, he chose to design a participatory training program to raise awareness among engineering students on the issue of technology use (Prometheus challenge). Hervé Michel notes that projects that start with the elderly patient are not reassuring for funders, even if they are perhaps more profitable in the long term. Calls for projects have a structure and performance indicators that make it difficult to include a patient-centered approach. More optimistically, Véronique Chirié points out that technologies do not come from nowhere, as project leaders generally have personal experience that motivates their proposals. On the other hand, the difficulty often lies in managing the complexity of these projects, which are part of existing organizations and practices, bring together players with different priorities, and require reconciling both short- and long-term thinking.