• How NFTs can help you track patient consent for clinical trials while also giving you more control over your own health data

  • A new NFT platform based on Hedera Hashgraph aims to give patients more control over their medical data. How does it function?

    Non-fungible tokens (NFTs) have made headlines due to multi-million dollar crypto art sales or blockchain games like Axie Infinity providing people in Southeast Asia with life-changing income.

    However, NFTs are more than just crypto art and gaming. According to cryptocurrency experts, the potential for NFTs — or unique digital assets whose authenticity and ownership are tracked on a blockchain — may be limitless as real-world use cases for NFTs expand, including in the healthcare industry.

    Patient consent data for clinical trials can now be tracked using NFTs thanks to RightsHash, a decentralized software engine that uses serverless, open APIs and was launched this month by Acoer, an Atlanta-based blockchain applications developer with a focus on healthcare.

    NFTs to track and monitor clinical trial consent

    RightsHash represents and manages an individual’s rights, such as consent to participate in a clinical trial, as discrete, unique, and traceable digital assets using NFTs on Hedera Hashgraph, an enterprise-grade public blockchain network. Users will be able to track and monitor their consent agreements in real-time, as well as track transactions from various data sources across multiple apps.

    “At Hedera Hashgraph, we see the benefits that public distributed ledgers and blockchain-based solutions can provide to enable greater transparency and security across the medical supply chain,” said Mance Harmon, CEO and co-founder of Hedera Hashgraph. “RightsHash is an essential component of that strategy.”

    Acoer collaborated with Consent Custody Corporation, a company that safeguards consent agreements and personal data assets, to develop ConsentHash, a customized blockchain-enabled consent management platform for clinical trials with patient health or medical consent situations, for RightsHash’s first live deployment.

    “We see RightsHash as a significant technological advancement in managing an individual’s rights and protections in the face of increasingly complex regulatory and policy requirements, as well as the need for managing accountable and dynamic consent,” said Brendan McSheffrey, CEO of Consent Custody Corporation, in a statement.

    In an interview with Forkast.News, Jim Nasr, founder and CEO of Acoer, stated that Acoer’s focus has been on developing technology that is ready to be used in a meaningful way. “Our challenge, as opposed to novelty concepts, has been how to make [NFTs] practical in a high volume use case or set of use cases.” Prior to joining Acoer, Nasr was the vice president of technology at drug development services firm Certara and the chief software architect at the Centers for Disease Control and Prevention in the United States.

    With its first use case — ConsentHash — now live, Nasr believes the RightsHash engine will support a variety of different business use cases, allowing developers and organizations to use the technology in a practical, scalable, and financially viable manner, without having to become an expert in every element.

    ConsentHash, according to Nasr, is about managing individuals’ rights and demonstrating compliance with data protection requirements in a world that is moving toward dynamic consent — the idea that consent is not a static, one-time event, but a nuanced and complex one that involves multiple steps, such as qualifying to participate in a specific clinical trial, which requires going through exclusive screening. In some cases, consent may expire, be revoked, or be transferred to a custodian or next-of-kin.

    According to Nasr, the traditional method of documenting consent was extremely inefficient, with a great deal of redundancy and a significant amount of human involvement. Organizations could save 50 to 80 percent of their costs by digitizing and streamlining their processes.

    NFTs on the blockchain could also give people ownership over their personal data, allowing them to profit more from their own data and have a greater say over who can access and use it.

    Health care data is being seized in a ‘land grab.’

    “There is a chance to help people understand that data has significant value,” Nasr said. “At the very least, they must understand some traceability and be able to monitor what is happening to it.”

    “There is a land grab for health care data going on. There is a lot of money available not only for primary data but also for secondary data marketplaces. We all, or at least people like myself, do not want two or three organizations, such as Amazon, Facebook, and Google, to become the kings of the fiefdom of data for all health care, with us as the product,” Nasr said. “Data is always the customer’s.”

    “It’s a no-brainer if you can bundle in a layer of trust and traceability at very low cost and very low friction,” Nasr said. “The movement is already underway.”

    Is public traceability a threat to privacy?

    But does the fact that the NFT is on a public blockchain means that one’s personal health information will be visible to all?

    According to Nasr, public accountability and traceability are not synonymous with a lack of privacy. Patient data is kept off-chain in the case of ConsentHash, and the basic information that is kept on-chain for traceability and accountability is encrypted to ensure privacy. “We can be traceable, accountable, real-time, and privacy-preserving, because if you aren’t privacy-preserving, all bets are off,” Nasr explained.

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