Perspectives and challenges in patient participation in research and innovation: a dialogue between patients and researchers.
Source: PubMed, NCBI / U.S. National Library of Medicine
To explore the perspectives of patients and healthcare researchers on their participation in clinical studies, in order to identify barriers and propose actions that promote more active, informed and equitable participation. Qualitative study with a phenomenological approach, based on a focus group technique. The session included five patients with experience in clinical trials and two oncology researchers. It was audio-recorded, transcribed verbatim, and analysed through thematic coding in three phases (open, axial and selective), following COREQ quality standards. Four main categories emerged: (1) the value of participation in clinical trials, with patients and professionals highlighting benefits such as safety, access to innovation, and knowledge generation; (2) the need for clear and adapted communication, pointing out the challenges of informed consent and the importance of trust-based relationships; (3) the key role of patient associations as intermediaries between the healthcare system and the community; and (4) the integration of a gender perspective, especially regarding conditions with a strong impact on young women. Structural, communicative and organizational barriers were identified. Active patient involvement in research improves the quality, relevance and equity of generated knowledge. Specific proposals are presented, including the creation of accessible information spaces, citizen participation channels and expert patient committees. These actions aim to prom
Abstract
To explore the perspectives of patients and healthcare researchers on their participation in clinical studies, in order to identify barriers and propose actions that promote more active, informed and equitable participation. Qualitative study with a phenomenological approach, based on a focus group technique. The session included five patients with experience in clinical trials and two oncology researchers. It was audio-recorded, transcribed verbatim, and analysed through thematic coding in three phases (open, axial and selective), following COREQ quality standards. Four main categories emerged: (1) the value of participation in clinical trials, with patients and professionals highlighting benefits such as safety, access to innovation, and knowledge generation; (2) the need for clear and adapted communication, pointing out the challenges of informed consent and the importance of trust-based relationships; (3) the key role of patient associations as intermediaries between the healthcare system and the community; and (4) the integration of a gender perspective, especially regarding conditions with a strong impact on young women. Structural, communicative and organizational barriers were identified. Active patient involvement in research improves the quality, relevance and equity of generated knowledge. Specific proposals are presented, including the creation of accessible information spaces, citizen participation channels and expert patient committees. These actions aim to promote more inclusive and person-centred research practices.