ESPE Yearbook of Paediatric Endocrinology

Brief Summary: This article evaluates the social conditions and global inequalities that shape patient-led innovation in the context of type 1 diabetes (T1D). The multidisciplinary team used an empirical sociological approach combined with normative ethical analyses. They conclude that open-source, patient-led innovation should be developed with a proactive strategy primarily targeting groups experiencing inequalities in access to health services.

The access of societies to the right to health is influenced by sociopolitical and economic inequalities, as multiple studies have shown (1,2,3). This study examines the influence of open source patient-led innovations in the context of T1D, which are characterized as “bottom-up” due to their patient-led nature, as opposed to traditional, on the elimination of social and health inequalities. The open-source community played a significant role in promoting awareness of the persistent burden associated with living with T1D and the issue of slow innovation cycles in T1D technology development. This paved the way for the more rapid development of commercial health technologies. The community is still in a precarious situation and is at significant risk, despite these positive effects. In a situation such as T1D, where the individual affected by the disease primarily assumes responsibility for the disease’s management, this precariousness is indicative of the increasing personal responsibility for health. One of the most significant deficiencies of patient-led innovation is that the population groups with the least access to healthcare and their health requirements are not included in “bottom-up” innovation discussions. For this reason, innovation under patient leadership continues to be embedded within many socio-political and economic inequalities while disrupting the power asymmetry held by physicians and medical technology manufacturers in traditional hierarchies.

This study emphasizes the rationale behind utilizing patient-led innovation in T1D and predicts its increasing prevalence in the future. It suggests that healthcare professionals should prioritize the use and significance of T1D open source technologies and their integration into the healthcare system.

References: 1. Marmot, M. G., & Wilkinson, R. G. Global justice and the social determinants of health. Ethics & International Affairs, 24(2), 119–130; Chung, R. (2021).2. Hendl, T., Jansky, B., & Wild, V. From design to data handling: Why mHealth needsa feminist perspective. In J. Loh & M. Coeckelbergh (Eds.), Feminist philosophy of technology(pp. 77–103). J.B. Metzler; Liao, S. Y., & Carbonell, V. (2022).3. ibid; Criado-Perez, C. (2019). Invisible women: Exposing data bias in a world designed for men.Penguin