Hand in hand towards a better care: an experience of patient-professional collaboration during COVID-19 pandemia

Abstract

The individual experience of people affected with Long covid (some of them professionals in the health system) has allowed us to understand the variability of symptoms that persist months after the initial contagion and to have a glimpse of how it affects the function of the body. The difficulties that the health system has had in providing an adequate response and care for these people, united by the uncertainty of facing an unknown disease, has led them to share their experiences through social networks and to organize themselves in groups. Some primary care (PC) professionals have collaborated with these groups in order to expose the situation and advise them on their process of recognition and care. The perseverance of citizen participation in defense of first hand knowledge experienced as a source of knowledge against the imposition of protocols elaborated by experts, and its organization in groups has led to the achievement of both local (working with the territorial government) and international political incidence (managing to contact institutions such as the WHO). The coordinated work of professionals and patients has made it possible to develop a joint care proposal for people affected with Long covid in PC that facilitates the construction of joint knowledge through observation, monitoring and the study of all of those involved.