Why a Personal Health Train?
Modern health research generates and requires vast amounts of data captured and stored at different locations. Managing these data in a centralized database is neither desirable nor feasible. Central data processing gives rise to issues on agreements for data-accessibility, data standardization and privacy. Researchers found ways to use health data from various sources in decentralized databases. They coined this approach, the Personal Health Train (PHT).
The PHT concept
The Personal Health Train (PHT) is designed to enable researchers and health care improvers to work with health data from various sources. It can give controlled access to data, while ensuring privacy protection and optimal engagement of individual patients and citizens.
The essence of the PHT approach is that the research question travels to the datasource ‘stations’ rather than data from various sources having to be transported to the research question. So, sensitive data remains where it is. The PHT can transport ‘workflows’ for complex research questions; ‘Which data elements are most predictive of survival after lung cancer given all data in the Netherlands?’; or more specific: ‘Which data stations contain data about me?’
The PHT connects different data 'stations’. Stations can range from very large databases to small personal lockers containing the data of one person. Each station has its own set of house rules describing what a visiting ‘train’ is allowed to do with their data. Ranging from ‘nobody can do anything’ to ‘anyone can use this element as they wish’.
Large scale application of the PHT requires that health data is FAIR (Findable, Accessible, Interoperable and Reusable).
The Personal Health Train network
The PHT was originally invented and developed for scientific research purposes. The PHT concept has quickly spread outside the research domain. Various organizations now show their interest in applying the PHT to different health related topics.
To learn from each other’s experiences and solutions these organizations participate in the Personal Health Train network. The PHT network is actively engaged in GO FAIR implementation and committed to the principles for development of the PHT as outlined in the PHT Manifesto. Join the PHT network and stay up to date with the Personal Health Train.
For further information, send an email to the PHT team.