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Thu 24 Feb 2022
For decades, concerns about the ethics of medical trials have been surrounding the medical field. A medical trial is a research experiment performed on ordinary subjects (voluntarily or paid) for evaluating the efficiency of a new drug or treatment.
Thus, we can say those participants play a major role in producing a stream of data, that are used by researchers and paramedical firms in developing new treatments.
However, the role of the participants ends with the end of the experiment, and they have no clue about the future of their extracted and preserved genomic data or how many parties are given access to it!. Also, they couldn’t benefit from selling this data on a large scope neither do they know how much they are really worth.
Aimedis offers patients all over the globe the opportunity to participate in clinical trials and benefit financially from them. By sharing their data on the DataXChange blockchain-backed marketplace, their participation will be more structured, restricted, and incentivized. Also, NFT technology addresses key challenging ethical issues in clinical research. (We will explain those ethics in-depth below).
1. Ownership of data
In clinical trials, medical institutions keep the participant’s bio-specimens de-identified, following the principles of the Health Insurance Portability and Accountability Act (HIPAA) Privacy Rule (45 CFR 164).
While this policy maintains the confidentiality of the patient’s data, it doesn’t explicitly restrict the secondary use of clinical data for future research. That means Researchers can benefit from patients’ tissue and sensitive data extracted in the clinical trials to bolster future research without their consent.
Leveraging patients’ data without their permission might betray the trust between patients and clinical research institutes and dehumanize their value as contributors to medical improvement.
Aimedis’ NFT blockchain platform (DataXChange) enables patients to benefit financially from their contribution to medical research by allowing them full control and ownership over their biospecimens data as inherently unique digital assets (NFT).
Each Data file is converted into NFT (A digital asset), and patients have a certificate of ownership over their NFTs. They can sell them directly to beneficiaries, including pharma companies, healthcare institutes, etc. Moreover, they can earn royalties each time their NFT is sold.
2. Transparency of information
Transparency is a crucial part of any data transaction. While on-site clinical trials provide zero to little clarity about the secondary usage of data extracted from the patients’ experiments or their future potential, NFT blockchain technology, applied by Aimedis, brings a solid foundation of transparency for all stakeholders through:
- Decentralized Trusted Timestamping: A web-based service that proves the data provider’s liability of his/her shared data at a given set of times.
- Smart contracts: relegate the selling/buying process and increase trust between seller and data provider, and offer a layer of security, safety, and simplicity between both sides.
- A decentralized ecosystem: that traces/tracks all the transactions between a seller and buyer in real-time, creating a fully transparent environment.
3. Data provider’s anonymity
Patients aren’t willing to compromise their privacy for any reason. That’s the reason behind the multitude of laws that determine the de-identification of the data-source provider.
But those laws don’t restrict transferring patient’s data with third parties or reusing it again in future research.
Aimedis’ s always keeping the data provider’s anonymity. If any authority like research institutes / CRO / pharma, decided to buy their data, Patients can sell data by providing their ID while keeping their identity anonymous. Thus, they can earn money without sacrificing their privacy.
Also, each NFT is encrypted so that only the data buyer can access it while a new private key is generated each time the data is sold and passed to the buyer.
4. Data security
The issue of security is sparking many doubts about NFT novel technology. Patients might ask how much their data is safe on the blockchain market and aren’t prone to hacking and tokenization by other users who can steal their data and sell it. Also, Buyers (like pharma companies ) can question the authenticity of this data.
We can say, NFT security heavily relies on the ability of centralized platforms to protect the private keys of all assets stored on them and the user’s ability to verify every piece of information he got.
Also, the Smart contract running the Aimedis NFTs exchange outlines the rights governing ownership of the digital data and develops trust between parties involved in the Data exchange trade. When both parties meet the condition issued in the contract, a transaction occurs.
5 . Data traceability
For participating in an on-site clinical trial, the patients are asked to sign up a consent that accentuates their compliance to undergo the trial. But The process of documenting the consent forms is inefficient, with a great deal of redundancy and human intervention.
What’s worse is the patient couldn’t comprehend well the process of documenting, and he has to sign forms multiple times without being informed about their significance or any right to withdraw his decision.
On the other side, organizations have limited knowledge about the patient’s identity or where those agreements are stored.
NFT technology allows seamless tracking of patients’ consent since each data generated during clinical trials is stored separately on a database (Sidechain) and tracked by RightsHash, a decentralized software engine that uses serverless, open APIs to track patient’s consent data.
For example, if a patient signs a consent. Using OCR, optical character recognition, this consent document will be immediately digitized as a PDF NFT, that holds a specific public token ID that can be tracked. That means any slight change that occurs to NFT’s state (for example if it’s accessed by some party) is tracked with one token ID. This tractability feature will give the patients more control and accountability over their data.
Clinical research involves many ethical issues that might limit the patient’s profit from his genomic data. Aimedis’s blockchain platform will provide the patient a full opportunity to sell their data all within a decentralized Eco-system that maintains data security, tractability, and anonymity of the data provider- All while allowing full ownership of their data.