Iris — Healthcare Data Standards Researcher
Type: Secondary Persona
Responsibilities
- Holds a dual appointment — academic research at a university plus an embedded role at a regional healthcare provider — and works the seam between the two so research informs clinical operations and clinical realities inform research
- Designs disease-specific information models on top of disease-agnostic EHR systems so the right documentation is captured at the first patient encounter, not the fifth
- Translates between vendor EHR formats and open standards (openEHR, FHIR, OMOP) and partners with industry vendors and consultancies on prototype dashboards and data flows
- Navigates the legal seams of regulated data — primary-purpose vs secondary-purpose laws, region vs municipality data sharing, cross-border data exchange under frameworks like the European Health Data Space (EHDS)
- Generates and validates synthetic data so research can move while ethical-approval pipelines run in the background, without ever touching real patient identifiers
- Frames the conversation around information-driven care — using accumulated patient-trajectory evidence to push providers from reactive to proactive intervention
Related Problem Statements
| Problem Statement | Context | Impact | Naftiko Today | Naftiko Tomorrow | Type |
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Need Disease-Specific Information Models
Iris finds that EHRs are deliberately disease-agnostic, so the right information is rarely captured at the first patient encounter — sending patients on multi-month detours through the wrong specialists. She needs disease-specific information models that scaffold what to capture and when.
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Need Cross-Organizational Patient-Centered Data Flow Across Legal Silos
Iris sees the patient's data sit in adjacent organizations that legally cannot share it — region vs municipality, primary vs secondary purpose, country vs country — even though all of them care for the same person. She needs a patient-centered data fabric that the law can actually permit.
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Need Synthetic Data Generation for Regulated-Domain Research Access
Iris waits months to years for ethical approvals and data extractions before she can touch real patient data. She needs a synthetic-data pipeline that's data-driven, schema-conformant, and privacy-preserving — so research can move while the legal track runs in parallel.
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Need Standards Adoption Forced by Regulation
Iris has watched well-designed healthcare data standards stall for years until regulation made them mandatory — FHIR via 21st Century Cures, openEHR via the European Health Data Space. She needs the regulation-to-implementation path to be cheap, demonstrable, and reusable.
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Need Multi-Stakeholder Patient-Centered Interoperability
Iris's project pulls in a vendor, a consultancy, a healthcare provider, and a university — each cares about a different slice of the same patient. She needs an interoperability fabric that lets every stakeholder see only what they should and contribute only what they own.
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Need EHR-to-Open-Standards Mapping (OMOP, openEHR, FHIR)
Iris and peers across Sweden are starting to ask the same question — how do we map raw vendor EHR records into open standards (OMOP, openEHR, FHIR) without doing it by hand for every region. She needs a declarative, reusable mapping layer that survives EHR vendor changes.
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