Practical example and current challenges
- Many business models already put the user or patient at the centre of digital business models, e.g. smart wearables, virtual clinical trial. Those models will receive an increased attention due to the Covid 19 pandemic. Things like telemedicine was not long ago seen as science fiction and will now become more commonly used.
- This principle of patient centricity requires the possibility to get in direct contact with the patients. While such communication between the patient and healthcare professional is possible in the context of a medical treatment, communication with other players like pharmaceutical companies is much more restricted for valid privacy reasons in the context of medical research. It would be nevertheless interesting to reach directly to the patients to seek their consent to use their medical data for particular research and finally inform them on the research findings made thanks to their contribution. That will greatly increase the trust of patients in the research conducted using their medical data.
- To prevent such broader communication, the particular challenge here is to protect the identity of the persons, so that the health condition of the patient is kept confidential and not revealed to their employer or bank. It must be ensured that communication is absolutely anonymous when direct communication with the patients outside the context of medical treatment is engaged.
- To shield the patient’s real identity, the PEPS project proposes to build a blockchain based ecosystem in which the patient’s real identity will be held by various patient trusted organizations like universities, hospitals or other public institutions. The bi-direction communication with the patients will go through such organizations. The patient chooses the organization he/she trusts to keep his/her true identity secret.
- Since most of such trusted organizations do not have the necessary IT infrastructure to securely host a blockchain node, it makes sense to use an established and secure cloud service. Building and maintaining trust in the cloud provider is critical to ensure the success of the project, and this goes hand in hand with the location and necessary certification of the cloud provider.
- The concept of the "PEPS" project was presented at a congress.1
- Ideally, patients should decide how the data should be used and who is allowed to use it.
What added value does the "GAIA-X project" offer?
- The integration with GAIA-X via a blockchain technology linked in the GAIA-X node leads to additional security and independence in the management of patients' real identity.
- Through authenticity and trust, GAIA-X offers IT security at the highest level to protect personal data from attacks by third parties. This creates trust, which could lead more people to agree to store their data.
- In addition, GAIA-X enables simple and secure access to further applications and uses via interfaces. Hospitals, universities, patients and other healthcare institutions can thus exchange information in accordance with the rules.
- Dr. Claudia Ivascu – Roche Pharma
- Benoit Marchal – F. Hoffmann-La Roche AG (Author)