Featured Article: IMI – Blockchain could help put people at ease about sharing their data

The Innovative Medicines Initiative (IMI) has written about PharmaLedger’s featured article from Romsoft.

The Innovative Medicines Initiative (IMI) is the largest public-private partnership in the life sciences sector. Together with the European Union (represented by the European Commission) and the European pharmaceutical industry (represented by EFPIA, the European Federation of Pharmaceutical Industries and Associations), IMI helps finance projects that fuel innovation in healthcare. PharmaLedger is a three-year project that is one of the many IMI-sponsored projects. IMI has recently written a featured article about PharmaLedger titled, “Blockchain could help put people at ease about sharing their data.” The article refers to our cooperative work with Romsoft, one of PharmaLedger’s technical partners that is helping create research and development software.

The article written by IMI refers to a PharmaLedger featured article “Romsoft – Personalised Medicine Use Case: Privacy vs Health,” It states that, “PharmaLedger’s technology can help fix data privacy problems such as those raised by COVID19 contact tracing apps.” Romsoft’s article discussed how PharmaLedger’s Personalised Medicine use case could help overcome privacy concerns when it comes to COVID-19 tracing apps. Data stored on a blockchain cannot be changed or tampered with, and there is no centralised party that can control or change the data either. As a patient, you have the right to control your own data and blockchain can be used as a digital trust tool to facilitate this requirement. 

The Dilemma: Privacy vs Health

IMI’s article recaps the issue of having to choose personal privacy versus health. This dilemma could be seen worldwide during the pandemic when COVID-19 tracing apps were introduced in some countries. Some countries made it mandatory to use the app, while others were voluntary. Romsoft stated that solutions proposed by the PharmaLedger project could help solve this privacy-vs-health problem by empowering patients to have access and control over how, when, and with whom it’s being shared. 

The Three Principles: Collecting Private Data

There is little transparency in how data is collected today by third-party companies (think about social media platforms or credit card companies). According to Romsfot, there are three principles that govern collecting private data: 

1. Clear Purpose – Personal information should be collected with purpose and not to benefit third parties

2. Transparency is key – what is being collected and how is being used?

3. Concept of decentralisation – don’t put all the collected data in one place

It is important to note that these concepts help govern our PharmaLedger blockchain-based platform.

PharmaLedger’s Blockchain Platform

IMI’s article introduces a key protocol that we are using to store data: open data sharing units (Open DSUs). This encrypted off-chain storage is anchored on the blockchain and it allows patients to manage their personal data safely. The idea is to have access to personal data via a smartphone and allow the data to be self-sovereign, i.e. having control over digital identities (make sure to read more about self-sovereign identities in our educational series #Hashing it Out: Blockchain Terms Explained Part 3.

In addition, PharmaLedger’s platform would make it easier for scientists or researchers to access data and accelerate public health innovation, all while maintaining privacy standards. By providing transparency to data sharing and making it easier for patients to understand the entire process, there would be increased trust in healthcare and among all those involved.

The article ends with a quote from PharmaLedger’s Lead Coordinator and Project Manager Maria Eugenia (Xenia) Beltrán (Universidad Politécnica de Madrid): “Blockchain is a mechanism for sharing data in a consented manner, that allows secured storage and management. In my view, sharing is about being able to store and further enable sharing, encouraging more connection and collaboration between sharing parts, which can result in important new findings or results.” 

You can read the original Romsoft article or our summary of it from an article on our website below.

Sign up below for our monthly newsletter to receive the latest updates about the PharmaLedger project. You’ll find out about our latest webinars, educational videos and any exciting events that we are participating in.


Sign up for our monthly newsletter to stay up to date on all our information, news and activities in just one email a month! Unsubscribe at any time.


Sign up for our monthly newsletter to stay up to date on all our information, news and activities in just one email a month! Unsubscribe at any time.