Fostering patients' participation in oncology research by developing psychological empowerment and a sense of community.

Abstract

Objectives: A "patient-researcher" training intervention was designed to improve participants' empowerment by building on their level of critical health literacy and to build a trustful partnership between participants and researchers, with the longer-term objective of co-constructing a community-based research project. The participants in the training intervention were recruited through the collaborative research platform "Seintinelles". This training intervention was aimed at patients or former patients suffering from cancer. The study's objective is to identify intervention's elements that appear to be relevant and those that should be improved for future implementation.

Methods: This study is descriptive research in the form of a case study. A questionnaire (post-intervention) and logbook were designed to analyze the implementation of patient-researcher training.

Results: Results suggest that the intervention should be flexible to adapt content to formal and informal exchanges. Participants were satisfied, although the intervention did not completely meet their expectations. Following the intervention, most participants felt able to participate in a research study.

Conclusion: At the end of this analysis, we can conclude that the 'patient-researcher' training intervention fulfilled its two objectives. First, it provided the knowledge and skills necessary for the implementation of a community-based research study and helped participants feel that they could take part in the different stages of such a study. Second, it initiated the construction of an alliance between 'lived experience' experts and scientific experts.