Accelerating research while protecting citizen rights.
Cohort discovery, real extracts with a data-quality report, an immutable ledger — and a plain account of which citizen controls work today.
Accelerating research while protecting citizen rights
Care generates evidence and evidence changes care. The loop only works if the person at the start of it can see where their data went and stop it.
Clinical care to population health to research to discovery to improved care, with genomics running through every stage.
Research the platform is built to serve
- Clinical research
- Translational research
- Learning health systems
- Population and public health research
- Genomic research
- Precision medicine
- Clinical trials feasibility
- Real-world evidence
Federated cohort discovery
Feasibility counts across independent sites with aggregate-only results and small-number suppression. Nothing row-level leaves the source.
OMOP common data model
A real extract, not a manifest: person, observation period, visits, conditions, drug exposure and measurements, with a data-quality report and an unmapped-code list rather than a silent drop.
Immutable extract ledger
Every extract recorded with its file hashes, so what was released can be reconstructed years later.
What a citizen should be able to do — and what they can today
This is the section where a platform is most tempted to describe its intentions. The right-hand column is the measured position.
| A citizen should be able to | Today |
|---|---|
| Understand how their data is used | Live A transparency register and a per-route data-source indicator |
| Declare communication needs and adjustments | Live |
| Grant and time-limit proxy access for a carer | Live |
| See their own portal activity | Live |
| See who read their record | Partial The surface exists for staff and information governance; it is not shown to the person |
| Control participation in a specific study | Not built The control renders and persists nothing |
| Exercise a national data opt-out | Not built The control renders and persists nothing |
| Export their record | Not built Returns a fixed demonstration bundle |
Why publish this
Because the alternative is a claim that fails at the first information-governance review, and because these four are on the platform’s own defect register with the work named. A capability gap that is written down gets fixed; one that is marketed does not.