Patient-reported data and the politics of meaningful data work

TY - JOUR

T1 - Patient-reported data and the politics of meaningful data work

AU - Langstrup, Henriette

PY - 2019/9/1

Y1 - 2019/9/1

N2 - Patient-reported outcome data have moved from the realm of research to center stage in efforts to provide patient-centered care. In a Danish context, health authorities are seeking to promote and standardize the use of patient-reported outcome data. This involves normative articulations of what counts as meaningful data work in a healthcare system characterized by intensified data-sourcing. Based on ethnographic material, I suggest that an assemblage of actors, both human and technological, has accomplished the articulation of meaningful data work, with patient-reported outcome as being dependent on the active application of data in clinical trajectories—in contrast to supplying data “passively” for secondary use for research or governance. This normative articulation of “Active patient-reported outcome” legitimizes the Danish patient-reported outcome assemblage by showing alignment of the concerns of patients, clinicians and health authorities. At the same time, “Active patient-reported outcome” foreshadows challenges in making data work meaningful in local practice.

AB - Patient-reported outcome data have moved from the realm of research to center stage in efforts to provide patient-centered care. In a Danish context, health authorities are seeking to promote and standardize the use of patient-reported outcome data. This involves normative articulations of what counts as meaningful data work in a healthcare system characterized by intensified data-sourcing. Based on ethnographic material, I suggest that an assemblage of actors, both human and technological, has accomplished the articulation of meaningful data work, with patient-reported outcome as being dependent on the active application of data in clinical trajectories—in contrast to supplying data “passively” for secondary use for research or governance. This normative articulation of “Active patient-reported outcome” legitimizes the Danish patient-reported outcome assemblage by showing alignment of the concerns of patients, clinicians and health authorities. At the same time, “Active patient-reported outcome” foreshadows challenges in making data work meaningful in local practice.

U2 - 10.1177/1460458218820188

DO - 10.1177/1460458218820188

M3 - Journal article

C2 - 30596321

SN - 1460-4582

VL - 25

SP - 567

EP - 576

JO - Health Informatics Journal

JF - Health Informatics Journal

IS - 3

ER -