ABSTRACT

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.

摘要

患有罕见疾病的患者及其护理人员有时会开发新的解决方案来应对他们的健康状况，但只有一小部分与他们的医生或其他卫生专业人员分享该解决方案。当考虑患者开发的解决方案的价值时，证据表明这些解决方案始终有助于提高整体生活质量。患者开发的创新在性质、质量水平、复杂程度和成本方面都非常多样化；尽管如此，大多数在成本和设计方面都很节俭。在本文中，我们在 COVID-19 大流行的背景下探讨了患者创新平台和社区的组织经验教训及其领导力表达。用于收藏、策展、并分配这些创新可以通过集中权力下放来帮助抗击大流行，我们根据我们对何时分配领导力以及何时不分配领导力的理解来考虑这个主题。分布式领导可以被认为是一个悖论，一个领导被保留和分散的过程。