Advances in technology have led to innovation across almost every industry. Healthcare has always been at the forefront of advances in treatment, the science of human anatomy, and understanding complex molecules and compounds. For the past several years, the explosion of information about patients includes biometrics, adherence to medication and prescriptions, exercise, and other parameters. Storing all this information and making it readily available remains elusive to the average consumer, and at Honeycomb Health, we have created a platform that is designed to address this barrier and help exchange information between patient and the various places and people they interact with.

The premise: Honeycomb Health, a nonprofit organization, is using blockchain technology to ensure secure crypto transmission of health information can be easily accessed by authorized parties, while maintaining a secure control and management by the primary owner. This article discusses a simple scenario that will be interesting to HCPs, patients, insurance companies, pharmaceutical/biotech companies, advocacy groups, and communities.

Sharing Information Among Stakeholders

We can see the potential closed loop of information that can be collected, exchanged, and shared across various stakeholders in Figure 1. Our patient visits his local healthcare provider for a routine checkup. The HCP orders some tests including bloodwork, and results are entered in the physician’s Electronic Healthcare Record (EHR) system. The patient has installed a blockchain app on their mobile device, so the physician’s system, via Application Programming interface, accepts the request to transmit the information to the HIPAA Cloud repository.

The patient then tracks medical adherence (via daily notifications and reminders) for any prescriptions and also fills out a simple survey to track their health attitude, etc. The physician can request to be notified if any threshold is reached (example: 30 days prescription, or if monitoring for health attitude, when a negative level is reached). Because a blockchain contract is in place, the information is automatically transmitted back to the physician EHR and if needed, an appointment can be scheduled. That seems straightforward enough, however, lets add more to this story.

The patient is diagnosed with a rare disease and joins an advocacy group to learn more about symptoms and treatments, as well as finding a disease specialist. Using apps, they can send redacted information to the advocacy group database, helping research organizations catalog the disease and cohorts. In addition, the community has some shared services for caregivers and families and supports genetic testing. The blockchain contract is in place so that information is protected.

Blockchain and Clinical Trials

Let’s add a Biotech that is looking to recruit for specific traits in the disease. Via the blockchain connection to the advocacy group, a request is automatically sent to the new patient informing that individual that they may be a good candidate for a Phase III trial. The university that is sponsoring the research is also a subscriber and has a grant to conduct additional interviews with both patients and HCPs to further understand the social and long-term effects.

Does the above scenario sound farfetched? Truth is, this is all happening in one form or another today and will continue to expand. The cost of a clinical trial can be staggering, and the more genetic and bio information researchers have access to, the better the chances of recruiting and finding patients who will benefit from the molecule. The advantages of blockchain allow the patient to control with whom, and when, their information is shared.

Blockchain works like a contract tool: Contracts can have expirations, or can be rescinded or renewed on a periodic basis. As a universal exchange layer between various software systems, blockchain also allows for some or all of the information to be depersonalized, which can help analytics and research organizations who are concerned about privacy and quality.

Nowhere is blockchain more needed than in helping rare disease communities, where the sheer numbers of persons affected can determine whether a company invests in development of a therapy.

The Mechanics of Blockchain

Now let’s dive a little deeper into the mechanics of blockchain and cloud services and how all these disparate systems can speak to each other.

Blockgeeks.com offers a great blog article that helps to explain how blockchain operates:

“A blockchain is, in the simplest of terms, a time-stamped series of immutable record of data that is managed by cluster of computers not owned by any single entity. Each of these blocks of data (i.e., block) are secured and bound to each other using cryptographic principles (i.e., chain).”

In the scenario discussed here, the patient enters their medical information into a health app on their mobile device. In addition, the smartphone is monitoring biometrics including daily steps, heart rate *(with a smart watch is more accurate), and recording in a log. When the patient visits their healthcare provider, the data can be transmitted. Here is what is key: The patient can select which information is transmitted, and this becomes a blockchain contract with the HCP electronic health record system, such as AdvancedMD, DrChrono, or NextGen.

Once in the HCP system, the basic demographic information (age, race, etc.) can also be redacted and sent to the university, registering the new patient (without specifics) and assigning them to the cohort. The biotech might be looking for a specific DNA signature, and since the patient did a 23andMe.com swab, the markers are also associated in the app. The patient grants access so that the biotech is alerted, and then either through the HCP (associated) or through the advocacy group establishes eligibility and enrollment.

AI Gets Involved

Artificial Intelligence (AI) can also be leveraged. For example, IBM Watson is able to accurately project patients likely to have colon cancer nodules based on profile and biometrics. Using AI to help determine clinical trial cohorts can also improve study results because, as with all rare disease efforts, one of the hardest challenges is to correctly diagnose the disease.

Sounds super “Big Brother” like? Well, that is the current ethical debate. On the one hand, the more information that can be obtained through tools such as mobile apps, fitness devices, DNA testing, and standard information systems used by physicians and healthcare providers allows for a wealth of knowledge to be contained in an easily transferred digital file. Security protocols, such as blockchain, allow for encryption and protection of the data so that only authorized persons/systems can interact. But on top of the individual-to-system relationship, mass data of populations can be merged and using AI can help narrow the success factors and be predictive.

The dilemma is how that information can be used, if it is subject to misuse, or worse. Imagine if you are denied coverage for a “pre-existing” condition because your DNA scan says you are likely to have an issue even though you show no signs or symptoms. Researchers predict that ethical challenges to persons in the healthcare industry will grow over the next three to five years. Companies need to decide if the investment to develop a treatment for a rare disease will pay off, (a nod to shareholders) and those who can afford “custom” therapies may stretch the boundaries.

The Danger of BioHackers

We also are seeing a new breed of researchers—called BioHackers. These are individuals who are familiar with genetics or bioscience, and developing unique solutions—as amateurs. Again, the ability to garner all this information and process can lead to dangerous outcomes.

How does this all tie together? At the individual level, patients and caregivers will find empathy with advocacy groups, and learn about trials and efforts to develop treatments. At the biotech level, a more focused cohort can be identified to ensure better success for the molecules or compounds during Phase II or Phase III trials. And for universities and R&D, the improved understanding of the disease, therapies, and genetics will continue to advance at a fast pace with information markers available.

We are on the cusp of an information evolution as we go from individual computing systems and disparate communications to a universal information exchange—so that all these devices, tools, and systems can exchange information securely, uniquely, and dynamically. The benefits and insights still outweigh the concerns, but the concerns are real and both laws and algorithms need to be aligned to ensure misuse and theft are prevented.

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