CAPABLE set out to enable patient-centred health care through a personalized and universally designed digital tool that enables the citizens themselves to collect, complement/curate, collaborate with and control personal health information in a structured, understandable, accessible and active way. The EU General Data Protection Regulation on Data Portability (GDPR) and Norwegian Law gives citizens right to request a digital copy of all digitally stored information about themselves - including health information. CAPABLE digital protoypes supports the individual´s imminent right to collect, transfer and manage personal data. Our R&D challenges includes usability & accessibility, digital health literacy, interoperability, privacy, security, trust and technical infrastructure, and reasonable trade-offs between these topics.
The project tapped into the challenges related digital citizen centered health information services. We have addressed concerns for privacy, access to and security of personal information. Investigation with stakeholder collaboration and analysis contribute insights to functionalities and features of the digital tools that is most likely to be attractive and useful for personal health information management. In particular, possibilities to participate, variability in available information, and if the information is available and correct are common challenges. Focusing on areas where citizens is active role and will request tools to manage personal health information in a safe and secure way, or share with family members, friend and/or caregivers of their choice has proved to be a good choice. Information sharing and communication about medication is very important but complex. For coordination the AHUS research group investigating sleep and sleep hygiene recruited their user to use CAPABLE to record personal observations in a sleep diary. This is an area where the user needs to coordinate information and can be an interesting case for the prototype development and tests of how information is accessible, understandable and available in ways that the citizen perceives as attractive for active use of personal health information on a daily basis.
The comprehensive dissemination experiences so far spans findings form the stakeholder analyses, discussions about the approach to interoperability (HL7 FHIR) and portability and the topical areas chosen for demonstration in the CAPABLE solution. Here are inherent information and communication challenges, that are valid beyond the Norwegian settings. Discussions with and presentations for colleagues in other countries support our assumptions about the project's novelty and potential for innovation. They are not familiar with other services that seek to create such personalized and universally designed digital tools and resources, primarily for citizen to collect, curate and control personal information and actively use for everyday health and wellness purposes. A sign of the innovation and exploitation potential of CAPABLE is reflected in awarding us the Trillium II Prize for innovative use of information in the International Patient Summary (see https://www.helse-sorost.no/nyheter/internasjonal-pris-for-innovativ-forskning). The project results will be further developed and exploited in 2 funded EU projects; Gravitate ? Health (IMI) og SleepRevolution(Horizon2020).
CAPABLE har bidratt digital løsning for registrering av egne observasjoner og egenrapporterte data i søvndagbok, bruker-initiert kommunikasjon og egenregistrering av legemidler. Funksjonaliteten kan enkelt utvides til andre områder. Forutsetningen er at brukerens anledning til å be om kopi av informasjon, inkludert egne helseopplysninger i digitalt format. Dette peker mot EU fokus «Citizen, Ethics og Health Data».
Samfunnseffektene av CAPABLE ligger i prioritering av digitale innbyggertjenester der man i tillegg til å lese kan bearbeide, oppdatere og visualiserte egen relevant helseinformasjon, og selv styre hvem man deler informasjon sin med. Dette er radikalt nye digitale verktøy, med fokus på innbyggerens egne og ikke helsetjenestens informasjonsbehov. Videreføring av CAPABLE innenfor IMI prosjektet «Gravitate-Health» kan bidra til å betydelige personlige og samfunnsmessige effekter i høyere etterlevelse av pågående behandling, trygger bruk av medisiner og mestring med sykdom.
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 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. This tool and approach will represent a major innovation in health care, as it enables the patient to play an active role.
Medication management, nutrition and coordination through collecting, complementing, managing and sharing of health information are our cases. We recognize the vital importance of these areas. More attention to citizens central role in nutrition, medication safety and coordination of fragmented information are vital to overcome shortcomings that cost our healthcare system billions. R&D challenges includes usability & accessibility, digital health literacy, interoperability, privacy, security, trust and technical infrastructure, and reasonable trade-offs between these topics.
The tool will be developed in close collaboration with interest groups, service providers and health care professionals. We will build upon results of previous research efforts by consortium members, including safety and security, universal design, nutrition, medication management and electronic record keeping.