Patient-controlled info flow 4 learning health sys

Website

https://www.genia.se/

Patient-controlled information flows for learning health systems is applying internationally well-known model of registry-based learning networks in chronic care and adding SSI capability to build an scalable eco-system using standard protocols.

ProjectID

ESSI_BOC2_44

Acronym

The LHS project

Additional Info

Clinical trials have been the standard for showing value of treatments. The real-world data is a new source for further value demonstration of health technologies. Our solution is for managing and modelling data by partnering with an innovative four-step-approach:
1. Formulate the healthcare data schema. Partner with stakeholders to develop information resource library. An open-source system for transparent data modelling is applied
2. Apply formulation to a data exchange workflow. SSI technology is applied to connect external RWD sources and to issue new patient generated credentials in app. Data is made available in a personal data store
3. Use data store to manage data from sources (formulation, aggregation and analysis) and re-issue credentials as needed. Include automated data agreements to ensure the solution is human-centric, ethical/lawful, quality assured and fully auditable. 4. Design instant feed-back loops for patients and clinicians to ensure engagement.

Enduser Relevance

Genia is a personal information exchange that empowers people living with long-term illness, supports co-production of care, and generates valuable health data in patient-controlled information flows.