Smuggling everyday Quality of Life into conventional oncological treatment.
Denny Chakkalakal (Humboldt Universität zu Berlin)
Sabine Biedermann (Technical University Berlin)
Paper short abstract:
The assessment-tool compose enacts a novel way of reflecting, tracking and communicating a specific version of Quality of Life during oncological treatment in germany. This contribution seeks to reflect on how an intervention like this affects clinical practice and the role we play in staging this
Paper long abstract:
So-called patient-reported outcomes (PROs) like Quality of Life (QoL) are increasingly used in clinical trials and for hospital benchmarking. But this metric version of QoL is rarely used in individual therapy decisions and treatment. Doing research about oncological treatment we tried to imagine, explore and enact a version of QoL which will enable patients to highlight a specific form of everyday QoL in clinical and non-clinical settings. Within the interdisciplinary research team em•pa•thy we designed a novel way of reflecting, tracking and communicating this specific version of QoL during oncological treatment in an outpatient clinic in germany. Our practice of worldmaking begins by engaging patients not only as experts of their daily routines, but also by providing them a way to materialize this expertise in our analog tracking device compose. With this intervention we expect to affect therapy management and decision-making practices in clinical realities, while using the tool as a mode of knowledge production of these realities. The making of one QoL by designing a new way to track and communicate it, will not only uncover how this QoL is enacted but how it interacts with different versions of QoL in the clinical and non-clinical realities. Our engagement with QoL is part of the ongoing study Patient Assessment in Cancer Care (PACC) that tests novel ways of knowing, gathering and communicating patient-reported outcomes (distress, pain experience) in clinical routines.
Smugglers, idiots and loyal cheats: situated intervention as method out of control