Empowering User Voices for Innovation in Health Research: A Qualitative Study on User Involvement in the European Landscape

Camilla Pezzuto & Giorgia Miglietta

Student thesis: Master thesis


Open and user-centred innovation has now proved its potential benefits and leveraging users as a source of innovation has already generated a significant cultural shift. If this was the case of corporate realities, the empowerment of users in research could potentially create an even greater transformation in the scientific world. Today, many sciences are endorsing an open approach and changing the modus operandi of doing research. However, healthcare emerges as one the scientific fields that could best exploit user involvement to speed up the production of scientific knowledge, support policymakers in regulatory processes and find solutions to unmet needs that relate to vitalities of life: wellness, disease, and death. At the European level, a widespread willingness to establish user involvement as a good practice in health research is slowly emerging. Though, the phenomenon is still isolated and fragmented as different countries rely on different health and governance systems which may affect the relevance attributed to such involvement and thus, the likelihood of supporting advancements in this direction. Moreover, no extensive guidance on who, how and when to involve and how to measure its implications can be found. Thus, discouragement to endorse this novel approach prevail yet. A map that captures user involvement initiatives across Europe, incorporating best practices into an integrated framework and analyzing their impacts on research, is, therefore, developed. Through a case-study strategy, the phenomenon is empirically investigated within its real-life context and using multiple sources of evidence to understand how it is changing health research. The study reveals that asymmetries exist in the ways users interact with and access health science as broader social consensus and widely-accepted guidelines and evaluation measures are missing so far. Still, the overall picture that unfolds from this qualitative study seems promising when considering the phenomenon unearthed potential to overcoming cultural barriers and transform the way of doing health research.

EducationsMSc in Management of Innovation and Business Development, (Graduate Programme) Final Thesis
Publication date2018
Number of pages107
SupervisorsMarion Poetz