Starting from the assumption that patients suffering from type 1 diabetes, caregivers helping diabetes patients and patient organizations have a basic level of disease-related knowledge, it is interesting to define the exact knowledge level of patients, caregivers and patient organizations regarding the (regulatory) changes in the product development cycle and the overall healthcare ecosystem and to define their expectations from the different partners, industry in particular.
The project aims at answering key questions in an empirical and highly structured way. Different qualitative and quantitative methods are used to perform the studies, including document analysis (scientific, legal and economic literature, …) and empirical studies (incl. case studies using in-depth interviews, econometrics).
The study is a follow-up study of former work performed in the research group of Prof. dr. Isabelle Huys at the KUL. Dr. Stevens’ PhD objective was the assessment of the challenges in collaboration between profit and not-for-profit organizations, with a special focus on intellectual property (IP) 14. The project aimed to provide recommendations on use of a certain IP-frame for successful participation in such collaborations. Sharing (pre-)clinical information is a topic that not only affects industry and academia, but also patients, as it is their information which lies at the heart of the research projects conducted.
The objective of the proposed Research Chair is to provide a set of recommendations to optimize the multi-stakeholder collaboration model in order to maximize the benefits for diabetic patients across Belgium. Specifically, the aim is to optimize knowledge sharing models and mechanisms, whereby patient information, and hence patient involvement, is central.
The current project is an initiative taken by the Institute for Interdisciplinary Innovation in Healthcare of the Université libre de Bruxelles (ULB) (I3H), in partnership with the University of Leuven (KU Leuven), and the Association Belge du Diabète (ABD). The different organizations state that patient involvement is crucial to improve testing methods and processes for the evaluation of safety, efficacy and effectiveness of new medicines, and the overall success of collaborations.