Samen verkennen, dieper begrijpen: Het belang van citizen science in exploratieve analyse van patiëntervaringsverhalen

This article delves into the significance of citizen science in exploratory research of patients’ experiences. It showcases two projects that integrated qualitative analysis, citizen science, and computational methods to analyze written patient stories. The overarching goal of these projects was to produce meaningful insights from patients’ stories by actively involving patients and their caregivers in the research process. Drawing upon their interdisciplinary experiences, the authors shed light on two pivotal insights from the experiments. Firstly, patients and caregivers not only contribute experiential knowledge, but also offer input for methodological development. Secondly, this combination of methods helps to illuminate new and underexplored themes in patient experiences. The article also reflects on the role of citizen science in these experiments, contemplating both its affordances and challenges. The findings emphasize the important role for researchers to facilitate the inclusion of experiential knowledge of patients and relatives in the research process and highlight the need for ongoing dialogue and collective meaning making to better analyze and understand patients’ experiences.