The HERACLES project is getting underway. The aim of this project is to reduce the impact of cancer. For this, it is working on an innovative and privacy-friendly infrastructure and agreement system for wide-scale data sharing. This data sharing should provide new insights that will help improve and keep oncological care in the Netherlands accessible.
A large number of Dutch people face cancer. As many as 124,000 people were diagnosed with cancer in 2022, according to figures from the KWF. More than 850,000 Dutch people are living with cancer. The disease often has a major impact on people's lives. By gaining insights from data, the HERACLUS project aims to help prevent, detect and better treat cancer. Bringing together data sources is central to this.
Various parties involved
HERACLUS is a public-private partnership. The project involves TNO, IKNL, Radboudumc, UMC Groningen (Palga), AstraZeneca BV, Janssen-Clilag BV, Roche Nederland BV, Almende BV, Linksight BV, Pharmo Institute NV, SURF BV, CZ Zorgverzekeringen NV and Stichting Olijf. Coordination also takes place with other project developments and parties, both nationally and internationally. The duration of the project is 2.5 years.
Within the project, the parties are working on a data infrastructure and agreement system. In the future, these should enable both public and private parties to securely answer various research questions these parties have from their own specific roles or backgrounds in healthcare.
Bringing data together in a secure way
Within the project, organisations ranging from hospitals to high-tech companies bring data together in a secure way. In this way, the parties want to enable important cancer research. Data should give more insight into the different phases of the health journey. This starts with lifestyle and prevention and ends with aftercare or palliative care.
A lot of data is available, but fragmented across different organisations and data sources. Data are also stored in various formats, and sometimes uncoded. Bringing these together can lead to valuable insights, the parties expect. However, the data involved is sensitive. The traditional approach to bringing data together is undesirable or even impossible for reasons of privacy. The parties therefore want to realise a data infrastructure that allows integrating and unlocking multiple data sources in a secure way.
The project consists of several phases, working towards setting up an infrastructure with links to multiple data sources. In doing so, the parties are building on proven models and techniques, citing Personal Health Train and Secure Multi Party Computation as examples. The parties also apply technologies that strengthen the privacy of data subjects. These technologies can aggregate data at the individual patient level. This allows conclusions to be drawn at group level about the quality of care provided. The method makes it possible to analyse data from different sources, without sharing details that reveal the identity of individuals.
Use case lung cancer
The parties specifically focus on two use cases: lung cancer and ovarian cancer. The lung cancer use case focuses on early detection and diagnosis of lung cancer. Its aim is to improve treatment and disease-free survival. In half of all patients with lung cancer, the disease is only detected at a disease stage when cure is no longer possible. Early detection can therefore improve the prognosis of future lung cancer patients.
The research questions within the use case focus on generating characteristics of people with lung cancer in (pre-)diagnostics. Thus, the parties want to develop a predictive and screening algorithm for early detection of lung cancer.
Use case ovarian cancer
The second use case focuses on improving disease-free survival for patients with ovarian cancer. For example, there is wide variation in the diagnosis and treatment of recurrent ovarian cancer. This leads to inequalities in treatment, quality of life and survival. The research questions in this use case focus on developing algorithms for early detection of cancer recurrences and improving treatment of recurrences.
In many ways, these use cases represent other cancers, according to the parties involved. The data infrastructure they build and test in these use cases are also expected to be representative and promising for other cancer types, and possibly other disease states.
Five extra healthy years of life
HERACLES is part of the Health and Care Knowledge and Innovation Agenda in the top sector policy for innovations of the Ministry of Economic Affairs and Climate. This agenda has the goal of giving the Dutch five extra healthy years of life by 2040. Health Holland is executor of this agenda. The duration of HERACLES is 2.5 years.
Author: Wouter Hoeffnagel
Source photo: Bokskapet via Pixabay
