We are looking for partners to help us build the Personal Health Train. To trigger your imagination below are some examples
Support hospitals to create FAIR data stations
You are an SME specialised in data integration. Together with a PHT academic partner you develop software that extracts clinical and imaging data from electronic health records (EHR) and picture archiving and communication systems (PACS) and publishes features from these data on an internal Semantic Web page using a formal ontology, thereby creating a FAIR data station.
Build a train to fill a personal health record
You are partnering with a patient organization to develop a personal health record (PHR) application for a disease. You build a PHT train that citizens can authorize to visit data stations, load the citizen’s data and store it in the citizen’s PHR.
Develop a serious game for dynamic informed consent
You are a health information ethics, privacy and legal expert who studies novel ways for patients to give informed consent before sharing data. Together with an IT startup company you develop a patient-facing serious game application to ensure patients understand the risks and benefits of sharing a certain piece of information (e.g. their genome) before being able to give their consent to share data in the PHT.
Create new ways for distributed computing
You are researcher whose research line involves image mining and correlating the found image features with disease outcome. These analyses require intensive computing resources. Together with a cloud provider you develop a hybrid, non-persistent, private cloud solution which allows you to learn from images stored in hospital PACS’s without the need for imaging data to move and/or each hospital you work with to buy a computing cluster.
Personal Locker for Genetic Data
The information present in an individual’s DNA will increasingly be used for medical treatment, life style advice, and other personal aims. Individuals that have been DNA typed, for example in the context of large cohort studies or genetic counselling, have little knowledge about the available DNA data. They do not receive a copy, can rarely access the data, and have little, if any control over its use. This is surprising since such information can already be used effectively, for example to adjust and optimise drug prescriptions. A personal DNA locker is a safe environment and infrastructure where individuals can access a copy of all their personal genetic data. The locker helps them to understand the implications for their health status and medical use, allows them to add personal phenotypic information and consent (or prevent) their sharing with others, including treating physicians and/or to support (specific) research projects. The personal locker will be FAIR and can thus be accessed by the Personal Health Train so that individuals can engage in biomedical research.
The DNA Bank: High-Security Bank Accounts to Protect and Share Your Genetic Identity, Johan T. den Dunnen* DOI: 10.1002/humu.22810