Centralized Decentralization, or Distributed Leadership as Paradox: The Case of the Patient Innovation’s COVID-19 Portal

Patients with rare diseases, as well as their caregivers, sometimes develop new solutions to deal with their health conditions but only a small fraction share the solution with their doctor or other health professionals. When the value of patient-developed solutions is considered, the evidence is that these solutions consistently help improve the overall quality of life. Patient-developed innovations are very heterogeneous in nature, level of quality, sophistication, and cost; nonetheless, the majority are frugal in cost and design. In this paper, we explore the organizational lessons of the patient innovation platform and community, and its leadership expressions, in the context of the COVID-19 pandemic. Multi-sided online platforms for collecting, curating, and distributing those innovations can help in the fight against the pandemic by centralizing decentralization and we consider this theme in terms of our understanding of when leadership is distributed and when it is not. Distributed leadership can be considered as a paradox, a process in which leadership is retained and dispersed.

MAD statement
This article seeks to Make a Difference (MAD) by challenging how we consider leadership in situations such as the COVID-19 pandemic, where the level of necessity is high (e.g. life-threatening disease), multi-disciplinary (multiple social and economic impacts) and distributed (similar necessities occur almost simultaneously across different geographies) and where a fast response is crucial to alleviate the suffering of populations. Attention needs to be given to bottom-up frugal innovations developed by citizens who are not scientists, who do so in a distributed way through formal mechanisms (such as multi-sided platform) for collecting, curating and distributing those innovations and can help in the fight against the pandemic.