Data Work: Meaning-Making in the Era of Data-Rich Medicine

TY - JOUR

T1 - Data Work

T2 - Meaning-Making in the Era of Data-Rich Medicine

AU - Fiske, Amelia

AU - Prainsack, Barbara

AU - Buyx, Alena

PY - 2019/7/9

Y1 - 2019/7/9

N2 - In the era of data-rich medicine, an increasing number of domains of people's lives are datafied and rendered usable for health care purposes. Yet, deriving insights for clinical practice and individual life choices and deciding what data or information should be used for this purpose pose difficult challenges that require tremendous time, resources, and skill. Thus, big data not only promises new clinical insights but also generates new-and heretofore largely unarticulated-forms of work for patients, families, and health care providers alike. Building on science studies, medical informatics, Anselm Strauss and colleagues' concept of patient work, and subsequent elaborations of articulation work, in this article, we analyze the forms of work engendered by the need to make data and information actionable for the treatment decisions and lives of individual patients. We outline three areas of data work, which we characterize as the work of supporting digital data practices, the work of interpretation and contextualization, and the work of inclusion and interaction. This is a first step toward naming and making visible these forms of work in order that they can be adequately seen, rewarded, and assessed in the future. We argue that making data work visible is also necessary to ensure that the insights of big and diverse datasets can be applied in meaningful and equitable ways for better health care.

AB - In the era of data-rich medicine, an increasing number of domains of people's lives are datafied and rendered usable for health care purposes. Yet, deriving insights for clinical practice and individual life choices and deciding what data or information should be used for this purpose pose difficult challenges that require tremendous time, resources, and skill. Thus, big data not only promises new clinical insights but also generates new-and heretofore largely unarticulated-forms of work for patients, families, and health care providers alike. Building on science studies, medical informatics, Anselm Strauss and colleagues' concept of patient work, and subsequent elaborations of articulation work, in this article, we analyze the forms of work engendered by the need to make data and information actionable for the treatment decisions and lives of individual patients. We outline three areas of data work, which we characterize as the work of supporting digital data practices, the work of interpretation and contextualization, and the work of inclusion and interaction. This is a first step toward naming and making visible these forms of work in order that they can be adequately seen, rewarded, and assessed in the future. We argue that making data work visible is also necessary to ensure that the insights of big and diverse datasets can be applied in meaningful and equitable ways for better health care.

KW - big data

KW - data interpretation

KW - data work

KW - decision support systems

KW - internet

KW - medical informatics

UR - http://www.scopus.com/inward/record.url?scp=85069326348&partnerID=8YFLogxK

U2 - 10.2196/11672

DO - 10.2196/11672

M3 - Review article

C2 - 31290397

AN - SCOPUS:85069326348

SN - 1438-8871

VL - 21

JO - Journal of Medical Internet Research

JF - Journal of Medical Internet Research

IS - 7

M1 - e11672

ER -