Short abstract:

Our paper draws from empirical research on the living with a chronic and/or rare disease or beyond a serious illness experience. We will present our reflections on the role and values of the mundane in healthcare, politics and research for such illness trajectories.

Long abstract:

While we can observe an increasingly sophisticated biomedicine, given the changing types of diseases in our society and the increasingly widespread and rapid circulation of personal health-related data collected in the flow of everyday life, an increasingly pivotal space is also being created in healthcare and research on how patients experience their illnesses, take and follow the therapies and behaviours prescribed to them, create data about themselves or use data produced about themselves.

Drawing from many qualitative studies conducted both individually and collaboratively over the past years, our reflections focus on diverse relevant aspects to think on the mundanization of healthcare: the pervasive sense of uncertainty experienced in the daily lives of individuals diagnosed with a rare disease that might push these patients in engaging with research; the role of technology in the everyday life of people living with a chronic disease and the value of these mundane interactions in healthcare; the professional challenges and vulnerabilities impacting the return to work for individuals living with or beyond chronic illness that become an urgent political issue to address; the pivotal role of peer support within healthcare trajectories and research.

Emphasizing the significance of mundane experiences in healthcare research enriches the ongoing debate on the coexistence of multitude logics in healthcare. We also aim to maintain focus on the enduring contributions of the Social Studies of Health and STS in fostering critical inquiry into the subjective experiences of living with illness and the diverse forms of expertise that hold significance in healthcare.