Centering Diversity: An ethnographic dessection of hemophilia care
Why this work is in the frame
A frame that forgets how it found something cannot be audited. These are the routes that admitted this work.
Bibliographic record
Abstract
In this paper, I describe my entry as a 'change agent' in the dynamic site of a hemophilia care center (HCC) in a Dutch university hospital. I discuss the importance of using participant observation to create insight into the interpretative flexibility of the site, by showing the presence of diverse interpretations by various actors on different moments of the HCC and what it means to 'make it work'. This reality contributed to a variety of roles that were ascribed to the researcher - a process which I took as a valuable source of information on the site. I conclude that, for interventionist research in a complex setting, it is of utmost importance to use a methodology that sensitizes the researcher for the different and changing views that exist on that setting. This allows one to become aware of the various roles that one is asked to play, and the solutions one is expected to come up with. With this sensitivity, a researcher can choose to intervene by giving voice to a certain interpretation, or at least avoid suggesting solutions that are bound to fail because they are contradictory to interpretations of strong actors on the nature ofthe setting.
Fetched live from OpenAlex and de-inverted. Abstracts are not stored in this database: the inverted indexes are 8.6 GB of the frame’s 9.3 GB of text, and the host has 13 GB free.
Full frame distilled prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. Learned from the 10,348 direct Codex labels and 10,348 direct Gemma labels. Candidate is the union of thresholded teacher heads; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels or direct frontier model labels.
Codex and Gemma teacher scores by category
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.000 | 0.000 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.000 | 0.000 |
| Science and technology studies | 0.001 | 0.000 |
| Scholarly communication | 0.000 | 0.000 |
| Open science | 0.000 | 0.000 |
| Research integrity | 0.000 | 0.000 |
| Insufficient payload (model declined to judge) | 0.001 | 0.000 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from it