Can patients control and share their own data via blockchain?

A Personal Health Environment (PHE) that aims to focus on the patient and to promote both personal care and broader research. This is envisaged through a personal application based on blockchain technology. The PHE makes it possible for patients to generate, upload, manage and share data with other parties. The idea is that patients can manage and exchange data and information via the blockchain technology in an autonomous, safe and efficient way. Here, the newly established partnership will attempt to pilot this technology in real life with OI patients.

In the Netherlands a lot of PHE applications already exist but none currently use blockchain technology or has a similar broadness in scope (geographic and stakeholders) to share which is extremely relevant for rare diseases. Such a PHE is promising for putting the patient at the center in the generation, management and sharing of data with the aim to personalise care and promoting valuable research. However, the technology also raises ethical questions. After all, putting patients in the center of care is related to questions regarding the autonomy and privacy of the patients.

The aim of this project is to recruit 20 OI patients for this live pilot. These patients will use the PHE application for 6 months to manage and share EMR data, pain and fatigue data and Fitbit data. During these six months hosting and evaluation service and technical management of the PHE application is key. Phase 2 is the user evaluation of the PHE application. Phase 3 is the ethical evaluation which will be done via ethical parallel research.

This pilot explicitly investigates the feasibility of using blockchain technology in its current form and maturity by patients with a chronic condition (OI) to manage their data. Results of the pilot phases will be published by the National eHealth Living Lab (NeLL).