• Adam Della Maggiora

Blockchain: patient centricity and getting ahead of privacy legislation

Updated: Sep 30

When delivering medical services and conducting clinical trials, patients must exchange sensitive information with medical professionals in order to get the outcomes they want. Their personal information gets stored electronically and may be further shared with sub-contractors, partners, or other providers. The use of blockchain in this exchange of personal information provides a highly secure, transparent, and legally defensible way to empower patients to pursue the outcomes and control who knows about them.

Governments legislate how personal and health information should be handled and who’s liable if the information is stolen or misused. Regulations such as HIPAA and GDPR shift the liability to the owners of the databases and levy material penalties if the regulatory guidelines aren’t followed. When a data breach happens, the database owner is at significant risk.

The exchange of sensitive personal information is as valuable as the exchange of money, and businesses have a financial and legal interest in ensuring how patient data is accessed and exchanged with their providers and partners. Since the data is generally exchanged in an electronic and sometimes automated fashion (i.e., there’s no human in the middle making sure the exchanges happen appropriately), there is also the need to enforce not only regulatory use of the data but also ensure limited use of the data specific to a particular provider.

For example, your primary care physician may send you to a lab to get blood drawn. While your physician may have rich data about you, they only need to share basic personal information about you with the lab, not your medical history. The lab needs to know who you are, your data of birth, and what test is being ordered, no more.

Traditionally, tracking this exchange of information and enforcing who gets to know what about a patient has been done inefficiently, inconsistently, and without the patient’s ability to know what’s going on. More importantly, the patient has no control or visibility on who gets their personal information and how they use it. It leaves the patient unknowing and is the antithesis of “patient-centricity”

When talking about clinical trials, government agencies such as the FDA in the US require detailed logging that demonstrates regulatory compliance with the exchange of patient information.

That’s where blockchain comes in. Blockchain is a shared, immutable ledger for recording transactions, tracking assets, and building trust. Digital currencies like bitcoin use the technology to record and enforce the exchange of that currency in a secure, distributed ledger.

Why is blockchain different than traditional logging and enforcement software? According to IBM: Blockchain… provides immediate, shared, and completely transparent information stored on an immutable ledger that can be accessed only by permissioned network members. …Because members share a single view of the truth, you can see all details of a transaction end to end.

There are three characteristics of blockchain that make it unique for use in medical transactions and clinical trials:

  • Distributed: information is stored only once and distributed so that all authorized participants of the blockchain see the same thing simultaneously, eliminating the duplication of information across multiple databases.

  • Immutable: once a record has been stored in the blockchain, it cannot be changed or tampered with.

  • Enforceable - blockchain uses smart contracts to enforce the rules of the information exchange. Smart contracts govern the terms in which the exchange happens.

What are the benefits for businesses and medical centers to use software built on blockchain?

  • Stronger security - a distributed, immutable ledger provides some of the highest security available when legally defending the use of patient data and passing security/privacy audits

  • Transparency - Since the ledger is distributed to all blockchain participants (businesses and patients) and the sharing rules are enforced by smart contracts, the transactions (not the exchanged data) are visible to everyone. If someone breaks the rules, everyone knows.

  • Chain-of-custody: Since all recipients of patient data exchange via the block chain, you can legally track the exchange of data down the ecosystem line. If a patient shares data with a Contract Research Organization, who then shares with a site, who then shares a provider, who then shares data back to the Contract Research Organization, the entire chain of transactions is transparently tracked and legally defensible if something goes away.

What are the benefits to a patient or patient’s caretaker?

  • Control - patient-centricity starts with the ability of a patient to control their personal information and anonymity. Coupled with other technologies (such as Avallano’s patent-pending privacy controls), a patient can share or revoke any of their personal information and rely on the blockchain to enforce their decision

  • Verification - blockchain is a ledger: that means the individual can verify that when they say “make me invisible”, the blockchain logs and enforces this action.

  • Trust - ultimately, patient-centricity is built on trust. Allowing patients to control when and how much they choose to reveal themselves to a trial goes a long way to ensuring the patient signs up and remains in a trial

Avallano chose a private blockchain as the ledgering and enforcement mechanism for our patient recruitment and engagement platform. In combination with our patent-pending software that enables individuals to share and revoke information from their phones, clinical trial businesses can deliver true patient-centric applications that inspire and build trust.

Patients control when and what they choose to reveal about themselves when considering participating in a trial. This democratization of anonymity is especially important for under-served communities (diversity and inclusion) who can have the power to avoid stigma and overcome fundamental mistrust in the industry. For businesses, building apps on the Avallano platform improves the recruitment process by reducing the time and number of people needed to achieve recruitment goals, and keeps patients actively engaged before, during, and after participating in trials, resulting in active potential recruits for future trials.

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