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P16.01.a Reflections on Collaborations With Patient Partners in Neuro-oncology Healthcare Research: Researchers and Patient Partners Perspectives

Year: 2025
Type: conference-abstract
Abstract: BACKGROUND 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 working with patient partners, we constantly aim to the right way of working that does justice to their knowledge and ‘being’. Nevertheless, in daily practices of collaborative health(care) research, ethical issues can occur, for example: lack of (financial) support, practical problems, and insufficient recognition of the vulnerable position of patient partners. MATERIAL AND METHODS The patient partners in this project are either individuals with a primary malignant brain tumour (glioma) or their spouse. Throughout the participatory work, the first author made notes about the interactions with patient partners. In this study, we reflect on ethical issues from the perspective of the first author while working with patient partners during her PhD research and how she, and we, as a multidisciplinary team, approached and addressed those ethical quandaries. RESULTS We selected three case descriptions 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. CONCLUSION 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. Appropriately responding to ethical issues in the collaboration with patient partners is an iterative process and thus ongoing work. In a follow-up study that we are currently working on, we describe reflections from the perspective of the patient partners. We believe that the patient partners have distinctive and valuable insights that can contribute to the understanding in ethical conduct of collaborative health(care) research.
DOI: 10.1093/neuonc/noaf193.513
Language: English
Open Access status: bronze
OpenAlex ID: W4414792356
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