Digitized Patients
"Elaborative Tinkering and Knowledge Practices in the Open-source Type 1 Diabetes "Looper Community
Bibliographic Data
| ID | 5420229 |
|---|---|
| Authors | Bianca Jansky (0000-0001-8180-645X, Institute for Ethics and History of Health in Society, Medical Faculty University of Augsburg, Augsburg, Germany, corresponding author) |
| Year | 2024 |
| Volume | 49 |
| Issue | 1 |
| Pages | 53-77 |
| Publication date | 2024-01-01 |
| Open Access | Yes |
| Type | ARTICLE |
| Venue | Science Technology & Human Values (JOURNAL) |
| Journal identifiers | ISSN: 0162-2439 • E-ISSN: 1552-8251 |
| Publisher | SAGE Publications Inc (PUBLISHER) |
| DOI | 10.1177/01622439231170443 |
| OpenAlex | W4367679625 |
| Language | EN |
| Citations received | 11 |
| References cited | 35 |
In this article, I explore knowledge practices in increasingly digitized, data-driven, and personalized healthcare settings by empirically focusing on the "looper community" in type 1 diabetes. This community develops and uses open-source automated insulin delivery systems and frequently criticizes slow innovation cycles and data monopolies of commercial device manufacturers. Departing from the literature on patient knowledge, I argue that studying these knowledge practices at the intersection of digitized and personalized health care, open-source innovation, and patient activism calls for an expansion of the theoretical notions of patient knowledge. Empirically I map out three knowledge practices: technical, including maintenance and repair work; recursive, including the building and maintenance of adjunct care and support structures; and methodological, including scientistic forms of self-experimentation. I propose "elaborative tinkering" to foreground the nuances of when and how patients' different forms of knowledge practices intertwine and when they are kept apart. This approach offers new concepts for understanding what it means to know as patients in spaces of (chronic) self-care, innovation, and activism
Health care · Knowledge management · Open source · Political science · Sociology · Computer Science · Engineering · Innovative Human-Technology Interaction · Mental Health and Patient Involvement · Mobile Health and mHealth Applications · Psychology
Mundane expertise
Scholar-activism as an object of study in a diverse literature
Hacking médical
Doing Your Own Patient Activist Research
Forced agency
Beyond the cybernetic loop
Transformations in Diabetes Care
The Dis‐Engaged Patient? Chronic Interfacing in a Regime of Digital Health Convenience
Invisible Participation
Hard-Earned Glimpses
Online boundary-work
Two Bits
Addiction by Design
Ethnography in/of the World System
The Patient 2. Many
From self-tracking to self-expertise
Care in Practice
Reassembling the Social
Evidence-based activism
Beyond the Quantified Self
From data fetishism to quantifying selves
Our metrics, ourselves
Techno-social reconfigurations in diabetes (self-) care
Research "in the wild" and the shaping of new social identities
Self-Tracking for Health and the Quantified Self
The Construction of Lay Expertise
Knowing Patients
Broken data
Proving or Improving
Multi-sited therapeutic assemblages
The tinkering m-patient
Impure Science
| Citations per year | 5.5 |
|---|---|
| Citation span | 2024 - 2026 (3) |
| Highly cited | No |