Reflections on Collaborations With Patient Partners in Neuro-Oncology Healthcare Research: Sharing Personal Experiences and Ethical Issues

There is growing interest in collaborations between patients and researchers in health (care) research. However, there is a disparity between the anticipated positive impact and the frequent well-intentioned but complex realities of collaborative health (care) research. In this paper, we reflect on ethical issues as described by the first author in her autoethnographic research diary notes while working with patient partners in her PhD project on existential treatment in neuro-oncology patients. We report how she, and we, as a multidisciplinary team, approached and addressed those ethical quandaries. The patient partners in this PhD project are either individuals with a primary malignant brain tumour (glioma) or their spouse. We selected three case descriptions, from the autoethnographic research diary notes of the first author, in which we describe ethical issues related to: (1) confrontation with negative health status updates of patient partners, (2) influence (deterioration) of cognitive functioning on collaboration in research, and (3) responding to issues that reach beyond research activities. The reflections on the three case descriptions offer insights into building meaningful partnerships with patient partners diagnosed with a brain tumour and how we can align these in our efforts to work towards (epistemic) justice. Reflections on ethical issues within collaborative health (care) research can contribute to meaningful, ethical and epistemically just partnerships with patient partners. We expect that similar ethical issues may arise in research involving patient partner groups with similar characteristics, such as people with a progressive disease and/or cognitive deficits. We encourage researchers to integrate reflections in their collaborative work because reflective practices help in navigating ethical issues.