PharmaLedger Featured Article: Romsoft – Personalised Medicine Use Case: Privacy vs Health

Romsoft reflects on the topic of privacy vs. quality of health and discusses PharmaLedger’s Personalised Medicine use case.

The company Romsoft, which creates custom software programmes for elaborate research and development projects, has written the article titled, “Health or privacy, the false dilemma.” Romsoft is one of PharmaLedger’s technical partners and co-lead of Blockchain Architecture and Reference Implementation, and this is their fourth featured article that they have written regarding our project and use cases. This recent article spotlights PharmaLedger’s Personalised Medicine use case and questions how technological innovation in the medical field often raises privacy concerns. 

Throughout the pandemic, COVID-19 contract tracing apps have been created globally. The article mentions three different scenarios relating to how data and privacy was collected during the COVID pandemic in three different geo-locations and were classified as: 

  1. Mandatory requirement
  2. Mandatory but later suspended
  3. Optional (no enforcement, voluntary)

The question then comes into play: How can we choose to save our lives but also preserve our privacy? Can we trust those that hold our data?

PharmaLedger is featured as using blockchain technology as a solution to solving the health-privacy dilemma, along with features such as artificial intelligence (AI) and machine learning algorithms. The article then states that three principles are involved in tackling this issue when it comes to implementing blockchain technology:

  1. Clear purpose – personal data collected should be used with the intended purpose and not to solely benefit third parties or centralised entities
  2. Transparency – what data is being collected, how it is being used and for how long should be known to those involved
  3. Decentralisation – clear governance rules so that not too much data is concentrated in just one place

These three core principles are aligned with PharmaLedger Personalised Medicine use case, which RomSoft highlights around its aim to reconcile health and privacy and advance patient rights. You can read more about it in the full article below.

PharmaLedger: Opening the Conversation

Another important factor that the Romsoft article covers is the protocol Open Data Sharing Unit (DSU). Not all information that is collected in healthcare can be stored just on blockchain, which is where these off-chain open DSUs are used. It would be risky to store everything in one place from a data-security perspective. These encrypted DSUs are anchored on blockchains and patients would be able to access their own health data via a digital wallet (something like a personal ID system). 

We have so much personal data being collected and sometimes we don’t even know it’s happening. We agree with the author that data is becoming an asset class in its own right and we are more aware of how important it is to keep personal data private, such as our medical and health records.

A characteristic of PharmaLedger’s platform is that it features self-sovereign identity (SSI): an identity system where patients can control when, by whom and how their data is accessed. All of this would be managed easily through a mobile phone application. Just as the article states, we agree that having a clear understanding of how health data is stored and used empowers all of us as patients. This also reduces fear and increases trust when it comes to data sharing in healthcare because we understand what is happening with our personal data.

It’s important to us to continue educating others on how blockchain technology works and how it can tackle issues regarding personal privacy concerns. This Romsoft article highlighted an important issue that the pandemic has pushed front-and-centre that relates to all of us: how can we gain better care without losing our privacy when it comes to our health data.

Blockchain technology cannot be applied overnight, and a team effort is required to enforce tangible solutions, which is exactly what we are doing with our eight use cases in the PharmaLedger, 29-partner consortium project. You can read more about our Personalised Medicine use case below, or visit our Resources and Publications page to learn more about our other remaining seven use cases. 

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