An increasing number of people are living with cancer, in 2019 about 800.000 people in the Netherlands and the number of people living 10 years after cancer diagnosis has doubled from 300.000 in 2000 up to ±600.000 in 2017. This significant group in society often experiences a high disease burden before, during and after diagnosis and treatment and this creates a distance from society and hinders participation. Innovation is crucial to decrease the healthcare costs and the (chronic) disease burden. A key solution is gaining insight in the health journeys of people living with cancer in order to improve those. This project proposes an effective and sustainable Health Data Space that will allow data analysis cross-organizations in peoples’ health journey without compromising privacy. The long-term objective is to improve health and participation in society for people with a (chronic) condition, exceeding the oncology domain, by enabling medical data insights via a decentralized Health Data Space.
Almende will develop the various integrations with the Health Data Space and the project's data sources and technical modules. Furthermore, we will explore the development of a tool which can collect information from, and disseminate information to, the patient's informal care network.
The project will be a first experience working with Data Spaces, which have the potential to resolve some pressing issues when it comes to data-driven approaches, especially in healthcare. Notably, access to data across organizations and privacy-conscious processing of this data into useful insight. This has potential to improve decision making and provide more personalized treatments, which aligns closely with our vision and that of our health spin-offs.