About the project
The ambition of CAPABLE is to enable truly patient-centred health care by making a personalized and universally designed digital tool that enables the patient/citizen to utilize their health information in a structured, understandable, accessible and active way. It will support the individual´s imminent right to transfer and manage personal data. R&D challenges includes usability & accessibility, digital health literacy, interoperability, privacy, security, trust and technical infrastructure, and their reasonable trade-offs. This tool and approach will represent a major innovation in health care, as it enables the patient to play an active role.
Objectives
CAPABLE sets out develop a prototype that enable citizens to actively utilize their clinical and personal health information to manage medication, improve nutrition, and facilitate health services coordination. CAPABLE will assess the efficacy of the tool through a large-scale feasibility study to find the best balance between functionality, security, usability & accessibility, performance, privacy and trust.
Outcomes
The objectives and outcomes of CAPABLE is to demonstrate a prototype tool that
- integrate and transfer health information (interoperability and portability),
- are accessible to all (universal design),
- supplement data from official sources with personal data and notes (patient generated information and personalisation),
- support ease of understanding (health literacy),
- handle information in a safe and controlled way (information security),
- help coordinate and administer health information (privacy and ethical considerations),
- offer advice or warnings (safety)
CAPABLE won the Trillium II prize (2019), for most innovative idea for use of the HL7 FHIR International Patient Summary Standards.
Background
The recent EU General Data Protection Regulation on Data Portability (GDPR) has given European citizens the right to request a digital copy of all digitally stored information about themselves – including health information. In Norway, current and future solutions like the “national core record” and the “patient medication list” allows citizen to read subsets of this information. However the national initiatives do not sufficiently support citizens to manage their health information actively in a safe and secure way or share it with the caregivers of their choice.
The CAPABLE tool, developed in this project, will bring innovation in empowerment of citizens to assemble and manage their health information, adapted to their preferences and capabilities. We are not aware of other tools taking a similar systematic and comprehensive user perspective. The main task is to demonstrate that a personalized, digital tool based on universal design principles enables and encourages citizens to manage their own health information in a safe, confidential, transparent and secure way. The demonstration of the tool is for medication, nutrition, and coordination of health service information.
Financing
Norwegian Research Council, 2018 - 2021