Á la recherche du santé perdue. Exploring tech-based solutions through co-creation to support quality of life with an invisible disability

In this workshop, co-organized with the Schildklier Organizatie Nederland (SON), the participants will explore what does it mean for different people to live with thyroid diseases and in which way it affects their quality of life. How did the diagnosis impact on their lives? How did their life values change over time? How did they adapt their life with chronical illnesses to it? How do technologies support them in coping with residual symptoms, reaching to professionals and find community support? How can technologies be improved to better respond to the needs and wishes of people with thyroid diseases? As much as the adoption of a specific technology can change our behaviour, adopting a technology that supports life with a disability is not always a choice (Forlano, 2023). With co-design practices and a citizen science approach, people with disabilities become co-creators through focus-groups, bringing their own life experience via interviews and other qualitative research methods (Smeenk et al., 2018), co-designing with professionals (Babbage et al., 2022; Donetto et al., 2015; Kulnik et al., 2019; Nasr et al., 2016; Ramos et al., 2020) and evaluating designs in Living Labs settings before they get on the market (Toso et al., 2023). Recently, persons with disabilities are getting more and more involved in the development of assistive technologies though co-creation practices, as they are considered experts of what life with a disability implies. There is still work to do to make sure that the technical solutions take into account the medical needs as much as the personal wishes in a non-stigmatizing way (IJsselsteijn et al., 2020).