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Patient involvement in health research: patient organizations’ perspectives, collaborations and knowledge contributions
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This dissertation studies the role of patient organizations in health research, focusing on their perspectives on patient involvement, their national and international collaborations, and the diversity of their knowledge contributions. Chapter 1 investigates Portuguese cancer-related patient organizations, examining their views, motivations and experiences with patient involvement in research. Chapter 2 explores the factors influencing patient organizations’ participation in multi-stakeholder Horizon 2020 EU-funded consortia. Chapter 3 proposes a novel conceptual framework for defining patient profiles and their distinct contributions to health research grounded in their experiential knowledge. Chapter 4 highlights this research’s contributions to existing knowledge and suggests future research directions.
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Patient organizations Patient involvement Multi-stakeholder collaborations Patient knowledge