The diagram below illustrates the different stages of the system that will be designed, built and tested.
Early users of the system include patients, cares, patient groups who are interested in knowing what clinical trials or research studies are available.
Participants could be recruited through doctors, hospitals and register via a secure, user-facing front end.
Once registered and GDPR-compliant consent provided, the participant triggers an upload of personal health data to a secure storage ecosystem.
This includes clinical data ( the ‘phenome’) within electronic health records, different formats of genomic data (the ‘genome’) and lifestyle data from wearable devices (the ‘physiosome’).
Patient healthcare data will not be stored on the blockchain.
Artificial Intelligence will match patients with the inclusion and exclusion criteria of relevant clinical trials.
This will initiate a conversation between the participant and their healthcare provider.
Blockchain will be used as a mechanism to transparently control who can have access to what elements of a person’s health data.
End users of the system include pharmaceutical industry, clinical research organisations and research performing institutions.
Stages of Programme
This system is being built be be used by many stakeholders including patients, healthcare providers, pharaceutical companies, clinical research organisations and academic institutions. During the first phase, RCSI researchers will engage with stakeholders and determine was is needed (‘requirements’) from their unique perspectives to make this an effective system. In parallel, we will consider the moral, ethical, and legal implications and dentify requirements to allow for robust consent platforms, regulatory compliance and governance structures.
Following the engineering of the BESTS platform by partners ERGO and Singularity Alpha (Akkure), informed by input from the previous stage, this system will be tested and validated. Specifically, this initial pilot will be from perspective of front-end users (patients) and the system populated with clinical and genomic data from a cohort of patients
This final phase is focused on the commercialisation of the BESTS platform post-project and is led by our partner Singularity Alpha (Akkure). For more information on commercialisation, please contact Prof Oran Rigby or visit www.akkure.com
Frequently Asked Questions
Is there Public and Patient Involvement (PPI) in this research?
Yes, a co-design approach with potential users of this system including patients, carers and people interested in clinical trials is essential to the success of this research. As such, these perspectives and experiences will be embedded at the very beginning and throughout the duration of the study. PPI contributors will play an active role towards informing the design, build and test of system that is optimised for deployment in a real-world setting
Perspectives will be gathered through a variety of approaches: one-on-one interview, focus groups and advisory committees that will explore areas such as:
Personal experiences in finding, accessing and recruitment to clinical trial
Attitudes and confidence towards sharing of personal health data including clinical
and genetic information
Understanding and perspectives towards technologies such as Blockchain and Artificial Intelligence
Defining value and benefit to primary investor in system i.e. the individual who is sharing their data
Communication of programme goals and complex terminology to a general audience
To get involved or learn more about PPI opportunities, please contact firstname.lastname@example.org
I am from a healthcare, research or pharmaceutical industry and very interested in this research study. How can I find out more or get involved?
We are at the very early stages of this exciting programme and as such as such consulting with all potential users of system to identify what is required for this to be an effective solution in a real-world setting. For more information, please contact email@example.com
What is Blockchain Technology?
The BESTS platform will be a secure, transparent and trustworthy system. Potential users of
the system including patients and carers need the reassurance that their health data is
securely shared, accessed by appropriate stakeholders and not misused in any way. This is
where blockchain technology helps to meet these requirements.
Many people often associate blockchain with technology that powers bitcoin. Whilst this was
the original purpose, blockchain is capable of so much more and has evolved to be used in
many other areas outside of finance.
Blockchain is decentralized and not stored on a single master computer or controlled by one
company, bank, or organisation. Rather, it is distributed over many computers that are in the
network, often called a peer to peer network.
As the name suggests, it refers to how data is stored in ”blocks” of information and then
linked together in a permanent “chain.”
The information that is stored inside each block depends on the type of blockchain. Here, the
blocks will contain health data belonging to participants of the system.
Once a block is created and an action is recorded, it has a timestamp, is secured and assigned
a hash. This can be compared to a fingerprint that identifies the block and all of its contents.
It is always unique, just like a fingerprint.
As each block is completed, it joins the other blocks on the chain creating a permanent
record of every transaction that is available to all the users of the blockchain in real time.
Each block, with the exception of the first block in the chain (known as the genesis block) also
contains the hash of the previous block. This ensures that it is in proper chronological order
and users always know where the block should be located in the chain.
If a change is made to one of the blocks in the chain, this causes the hash of the block to
change and in turn, make all following blocks invalid as they no longer store a valid hash of
the previous block. Blockchains also have a mechanism called proof of work that slows down
the creation of new blocks.
These features combined mean that blockchain is highly accurate, reliable and secure. In turn
this ensures integrity, authenticity and trust in the system and the data that it contains.
If you have any queries, please contact Dr. Laura Brady, BESTS Programme Manager at