A Transformative Shift from the Documentation Paradigm to Assisted Planned Data Collection in Health
| Reference number | |
| Coordinator | Karolinska Institutet - Karolinska Institutet Inst f klinisk neurovetenskap |
| Funding from Vinnova | SEK 28 548 450 |
| Project duration | October 2023 - September 2027 |
| Status | Ongoing |
| Venture | Increased utilization of health data |
| Call | System demonstrator for utilization of healthcare data |
Purpose and goal
We will implement a general modular information architecture that supports the patient´s path in care and where structured data is generated in the same format regardless of application. This data can then be used in real time for record keeping, local quality work and operational follow-up, quality register reporting and clinical research. The architecture allows multiple use of health data in real time and ensures that power over the content of care remains at the clinical level (including patient influence)
Expected effects and result
The project will lead to increased understanding of how health data can be used for multiple purposes in line with the GDPR as the pre-planning makes the principles of the GDPR easy to implement. Secure local storage of health data in a known structure allows the healthcare provider to manage the responsibility for the data. The use of outcome measures in the feedback to healthcare is an important part of improving the content of healthcare. Organized patient processes supported by a transaction engine will help reduce variability in healthcare.
Planned approach and implementation
First, the common structure for process-oriented information support will be implemented. The process system that was previously tried will be modified and an implementation of a CDR (clinical data repository) must be developed on the basis of previous experience. Four comprehensive scenarios will demonstrate the new way of working: Support for patients with chronic disease, self-monitoring, app support for qualified medication in rare diseases and longitudinal secondary prevention. The effect of real-time access to quality data in care will be studied in particular.