Reflective accounts from collaborative neuro-oncology research: perspectives from patient partners and researchers

Abstract

There is increased attention to collaboration with patients in healthcare research. Two decades of reporting on and evaluating collaborative healthcare research practices have led to studies describing evidence of (mainly) the positive impact of patient collaboration on the research process. However, less attention has been paid to what happens within the collaboration itself and how both patients and researchers reflect on their joint work. In the PhDproject “Existential Treatment,” a collaborative research project at the neuro-oncology department of an academic hospital in the Netherlands, the first author collaborated with patients with a malignant brain tumor, who took part in the research as partners. To preserve the quality of the collaborative process, this chapter reports on reflective work undertaken by the patient partners and researchers within the “Existential Treatment” project. Together, as a team, we are trying to do the right thing in our collaboration; this means we strive to collaborate in an ethically responsible manner. This requires time and space for reflection on the collaborative process. Incorporating reflective practices, such as writing down personal thoughts and experiences and discussing them with each other, fosters authentic and meaningful collaboration between patient partners and researchers during research processes.