Patient-reported data and the politics of meaningful data work

被引:22
|
作者
Langstrup, Henriette [1 ]
机构
[1] Univ Copenhagen, Copenhagen, Denmark
关键词
articulation; data assemblage; healthcare policy; meaningful data work; patient-reported outcome data;
D O I
10.1177/1460458218820188
中图分类号
R19 [保健组织与事业(卫生事业管理)];
学科分类号
摘要
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.
引用
收藏
页码:567 / 576
页数:10
相关论文
共 50 条
  • [41] Patient-reported outcomes: important data in early trials of novel therapies
    Jim, Heather
    Oswald, Laura
    LANCET HAEMATOLOGY, 2022, 9 (12): : E866 - E868
  • [42] Patient-Reported Outcome Measures (PROMs) for Data Collection for Pediatric Radiotherapy
    Dunlea, C.
    Holborn, C.
    Gedara, C. Kambakara
    Gains, J.
    Gaze, M.
    Lim, P.
    Soto, C.
    Chang, Y.
    INTERNATIONAL JOURNAL OF RADIATION ONCOLOGY BIOLOGY PHYSICS, 2025, 121 (03):
  • [43] Patient-reported outcomes of ayurveda consultation in relation to clinical practice data
    Edwards, Marc T.
    EXPLORE-THE JOURNAL OF SCIENCE AND HEALING, 2023, 19 (05) : 721 - 729
  • [44] Generalizability of patient-reported survey data linked with electronic health records
    Huynh, Stephanie
    Strader, Carey
    Nguyen, Jennifer L.
    Haskell, Tom
    PHARMACOEPIDEMIOLOGY AND DRUG SAFETY, 2019, 28 : 551 - 552
  • [45] Can Patient-Reported Outcomes Data Be Used to Improve Quality of Care?
    Yeo, Heather L.
    Temple, Larissa K. F.
    SEMINARS IN COLON AND RECTAL SURGERY, 2012, 23 (04) : 188 - 191
  • [46] PATIENT-REPORTED OUTCOMES ON LIVING WITH AN OSTOMY: REPORTING ON 3 YEARS OF DATA
    Malandrino, Renee
    Goldberg, Margaret
    Peacey, Lisa
    Bird, Andrew
    Riemer, Michael
    Drolshagen, Colleen
    JOURNAL OF WOUND OSTOMY AND CONTINENCE NURSING, 2022, 49 : S86 - S87
  • [47] Missing Patient-Reported Outcome Data in an Adjuvant Lung Cancer Study
    Land, Stephanie R.
    JOURNAL OF CLINICAL ONCOLOGY, 2008, 26 (31) : 5018 - 5019
  • [48] E/Tablets to collect research-quality, patient-reported data
    Uronis, H. E.
    Herndon, J. E., II
    Coan, A.
    Bronson, K.
    Wheeler, J.
    Lyerly, H. K.
    Morse, M. A.
    Abernethy, A. P.
    JOURNAL OF CLINICAL ONCOLOGY, 2008, 26 (15)
  • [49] Clinical significance of patient-reported questionnaire data: two more steps?
    Gagnon, Dennis D.
    JOURNAL OF CLINICAL EPIDEMIOLOGY, 2007, 60 (01) : 103 - 104
  • [50] Practical and statistical issues in missing data for longitudinal patient-reported outcomes
    Bell, Melanie L.
    Fairclough, Diane L.
    STATISTICAL METHODS IN MEDICAL RESEARCH, 2014, 23 (05) : 440 - 459