Data as symptom: Doctors’ responses to patient-provided data in general practice

Abstract

People are increasingly able to generate their own health data through new technologies such as wearables and online symptom checkers. However, generating data is one thing, interpreting them another. General practitioners (GPs) are likely to be the first to help with interpretations. Policymakers in the European Union are investing heavily in infrastructures to provide GPs access to patient measurements. But there may be a disconnect between policy ambitions and the everyday practices of GPs. To investigate this, we conducted semi-structured interviews with 23 Danish GPs. According to the GPs, patients relatively rarely bring data to them. GPs mostly remember three types of patient-generated data that patients bring to them for interpretation: heart and sleep measurements from wearables and results from online symptom checkers. However, they also spoke extensively about data work with patient queries concerning measurements from the GPs’ own online Patient Reported Outcome system and online access to laboratory results. We juxtapose GP reflections on these five data types and between policy ambitions and everyday practices. These data require substantial recontextualization work before the GPs ascribe them evidential value and act on them. Even when they perceived as actionable, patient-provided data are not approached as measurements, as suggested by policy frameworks. Rather, GPs treat them as analogous to symptoms—that is to say, GPs treat patient-provided data as subjective evidence rather than authoritative measures. Drawing on Science and Technology Studies (STS) literature,we suggest that GPs must be part of the conversation with policy makers and digital entrepreneurs around when and how to integrate patient-generated data into healthcare infrastructures.