The Short Notes series intends to provide analyses on key topics related with the health sector. This Short Note addresses the question of how to build better partnerships with patients in health research, proposing a new conceptual framework that systematically defines three distinct levels of representation of these individuals in research — the individual level, the community level, and the systemic level — distinguishing them by the different dimensions of experiential knowledge and the specific contributions each level can offer to health research projects.
This framework responds to a central challenge: helping to align the experiential knowledge of patients with the needs of each research project, promoting a careful, non-opportunistic selection of patient partners in health research projects, and strengthening more effective and meaningful partnerships between patients and researchers.
The proposed new conceptual framework benefits both researchers and patients, by recognising that different forms of experiential knowledge can be equally valuable depending on the objectives, context, and phase of the health research project. In short, it makes it easier to identify the desired and appropriate contributions and to build more effective partnerships, helping to align the research agenda with the real needs of patients, improve the quality and relevance of studies, support the recruitment of participants in clinical trials, and strengthen the interpretation, dissemination, and uptake of the resulting evidence.
🌐 See report in Portuguese here:
This report is part of the Social Equity Initiative , a partnership between Fundación ”la Caixa”, Banco BPI and Nova SBE.
Author of the study: Constança Roquette