A game of snakes and ladders: the world of complex health and social care data linkage
Bibliographic record
Abstract
Objective and ApproachResearch on social care services requires large, comprehensive, routine datasets. Launched in November 2019, Developing resources And minimum data set for Care Homes’ Adoption (DACHA) study aims to develop a prototype minimum dataset as proof of concept and to propose implementation. We describe our experience since 2021 of identifying, applying for, and linking care home, local, integrated care system (ICS) and national datasets, including direct-care software-provider data, GP and NHS England (NHSE) datasets. ResultsOur key challenges: Risk aversion and fragmented information governance within and between organisations. Complex information governance structures must be understood before participants are recruited. Shifts in the data landscape: data ownership moved from clinical commissioning groups to ICSs; NHSE merged with NHS Digital. Research funding: research is required of ICSs, but it is not a system priority, so processes and funding aren’t in place, and research burdens an already strained system. Our key lessons: Formalising agreements early on and obtaining, and maintaining, senior, committed buy-in. Studies should value the data sharing process through the inclusion of data controllers and information governance staff in the system in research project budgets. The facilitation of GP and social care data collection nationally must be balanced with its administrative burden. ImplicationsThe DACHA study overlapped with the COVID-19 pandemic and could only engage a limited number (n=3) of ICSs within project resources. Nevertheless, the complexity of the system and the plurality of actors delay or even block legitimate research interests.
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.
How this classification was reachedexpand
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 | 0.001 | 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 | 0.000 | 0.000 |
| Scholarly communication | 0.000 | 0.001 |
| Open science | 0.001 | 0.000 |
| Research integrity | 0.000 | 0.000 |
| Insufficient payload (model declined to judge) | 0.000 | 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 itClassification
machine, unvalidatedMachine predicted; a candidate call from one teacher head, not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".