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“We can still talk to the patient!” - Negotiating the narrative power of patient reported data

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European Society for Socially Embedded Technologies (EUSSET)


Patient Reported Outcome data (PRO data) are standardized questionnaire data on patients’ own experience of their health and quality of life increasingly collected on digital platforms as part of treatment trajectories. In Denmark, national efforts are being put into developing questionnaires tools for meaningful clinical use of such data in cross-sectorial clinical pathways. PRO data is among other things seen as a way to enhance patient involvement by focusing the clinical encounter on “what matters to patients”. With increased datafication of healthcare, some see the power of the irreducible patient narrative set aside for quantified, standardized and thus reductive representations of the patient – PRO data potentially being a case in point. Rather than assuming such reductionism, in this paper I will explore empirically how health professionals engaged in developing PRO-tools enact the relationship between PRO data and more complex, narrative representations of the patient. Based on fieldwork in the national Danish initiative engaged in choosing and developing PRO-tools for heart- rehabilitation, I will suggest that PRO data is both enacted as an illumination of the patient narrative, a substitution for the narrative and an inhibitor of the narrative. The tensions between different enactments call for further reflections on the role of PRO in emergent digital health infrastructures.


Langstrup, Henriette (2019): “We can still talk to the patient!” - Negotiating the narrative power of patient reported data. Infrahealth 2019 - Proceedings of the 7th International Conference on Infrastructures in Healthcare 2019. DOI: 10.18420/ihc2019_012. European Society for Socially Embedded Technologies (EUSSET). PISSN: 2510-2591. Vienna, Austria. 30-31 May 2019