Despite all technological developments in healthcare during the last decades, we are far from optimum Quality-Adjusted Life Year (QALY) and we can still improve on the Disability-Adjusted Life Years (DALY). But really the question is so much more personal than what we get even from the fairly new Patient-reported Indicators Survey (PaRIS) and one main reason for that is the systems inability to reuse data.
A central question for this session is how we could get safe, secure, equitable circular data driven Healthcare systems that benefit both Patients and Health Professionals as well as Researchers and Citizens.
To ensure real patient empowerment it has become more important today than ever that we speak the same language in patient meetings as well as in research, something that could possibly be improved by using more of structured data. This has been a challenge both for patient groups as well as different research communities as the same terminology and coding has not always been used; e.g. what does “Do you smoke?” mean precisely?
Presentations in this session:
- How can we make personalised medicine a reality while ensuring data protection? by Juuso Parkkinen
- SalusCoop: Citizen data cooperative for health research by Javi Creus
- Sharing Health Data Through Semantic Containers by Jan Leindals
- Service provider for human-driven and fair data economy – When VALUE matters by Iiro Jokinen