Date of Award

5-12-2024

Degree Type

Dissertation

Degree Name

Doctor of Philosophy (PhD)

Department

Information Science & Technology

Advisor(s)

Carsten Oesterlund

Keywords

Collaboration;Drug Development;Drug Repurposing;Knowledge Sharing;Nonprofit organizations

Abstract

Purpose: This dissertation investigates the knowledge sharing practices and inefficiencies among Rare Disease Nonprofit Organizations (RDNPs) engaged in drug repurposing efforts, particularly focusing on the drug sirolimus. The goals of this research are to provide an understanding of the knowledge-sharing practices and challenges for RDNPs and to contribute to the academic discourse in knowledge sharing theory by applying it to a unique and practical use case. The motivation behind this research stems from the pivotal role RDNPs play in the rare disease treatment landscape. Given the limited financial incentives for pharmaceutical companies to invest in rare disease treatments, RDNPs are often at the forefront of innovative approaches like drug repurposing. However, the lack of centralized knowledge-sharing mechanisms among these organizations leads to significant inefficiencies. Design & Methodology: This research adopts a multi-method qualitative approach including thematic transcript analysis, network analysis, and detailed case studies of RDNPs. This approach allows for a comprehensive examination of both the micro-interactions of knowledge sharing and the broader organizational structures that support or inhibit these practices. Findings: The findings reveal that while RDNPs are pivotal in advancing drug repurposing initiatives, they face significant barriers in knowledge sharing due to the decentralized, volunteer-based nature of their operations and lack of systematic processes. Specifically, inefficiencies arise from a lack of centralized resources, varied levels of experience among RDNPs, and insufficient formal mechanisms for collaboration and information dissemination. These factors lead to duplicated efforts and missed opportunities for leveraging collective knowledge in drug repurposing. Originality & Value: This research contributes to the field of knowledge management by applying Nonaka’s Theory of Dynamic Organizational Knowledge Creation (Nonaka, 1994) in the novel context of rare disease nonprofits and drug repurposing and suggesting a framework of factors that affect the knowledge sharing practices from Yang and Maxwell (2011). It highlights the critical role of structured knowledge sharing practices and the potential of organized, systematic efforts to enhance the effectiveness of drug repurposing projects. The dissertation provides a theoretical framework for understanding interorganizational knowledge sharing among small nonprofit organizations and offers practical insights that can help RDNPs improve their operational strategies and enhance collective impact on drug development for rare diseases.

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