Introducing the HIE of One

Patient-Controlled Independent Health Record

Highlights Video (2:25)

The Problem: A broken market

By almost any definition, US healthcare is broken. Quality and cost are difficult to assess and even harder to control. Major decisions are politicized. People are frustrated. Cost is spiraling, leaving too many people without adequate care.  

The free flow of accurate information must be available to the key influencers and decision makers in order to deliver optimal care. These are the physicians that recommend and sign orders and the patients that choose a physician and accept treatment.

In our current system neither physicians nor patients control the majority of healthcare information.  It's controlled instead by institutions, such as hospitals, which employ physicians; by government; and by data brokers in the business of aggregating and selling patient information to manufacturers, insurers and other third parties. The result is fragmented information that compromises quality, cost, and provider and patient satisfaction. Consider:

References: 1. Technology CEO Council. http://www.techceocouncil.org/clientuploads/reports/A_Healthy_System_Final.pdf. 2. http://www.jointcommission.org/assets/1/6/tst_hoc_persp_08_12.pdf. 3. Mehrotra A et al. Milbank Q. 2011;89(1):39-68.  4. Gandhi TK et al. Ann Intern Med. 2006;145(7):488-96. 5. https://dashboard.healthit.gov/quickstats/pages/breaches-protected-health-information.php. 6. https://dashboard.healthit.gov/quickstats/pages/FIG-Patient-Access-to-Results-of-Clinical-Lab-Tests.php.

The answer: Individual agency

Control over our personal information is necessary--but not sufficient--because individuals must also be able to process their information on their own terms. Today processing is in the hands of Google, Facebook, and hospitals. That power is used strategically to their benefit, not the benefit of the physician or patient.  Thus the broken healthcare market continues.

To preserve our dignity and an open future, our "personal agents"-- that is, our digital financial and healthcare representatives--must be capable of computation, machine learning, and payment. As technology advances, our personal agents will become increasingly autonomous, capable of interacting with the agents of other individuals as well as with institutions, the way people always have.

Licensed professionals, be they plumbers or doctors, are an important class of personal interaction because they serve both a regulatory and a decision support role. Their relationships have 3 principal components:

Blockchains and related technology are a breakthrough in individual agency 

Blockchains demonstrate scalability in all 3 of the essential components of patient-to-physician transactions: they are a bilateral choice, include payment, and leave an auditable trail.

It’s important to note that physicians add value to blockchain-based contracts by serving as the link between the digital world of the blockchain and the material world of healthcare activity. With self-sovereign (self-ownership) technology and blockchain support, the physician can be independent of any particular vendor or institutional interest and can access patients and innovative services directly. Patients who control their own technology and health records can also access both physicians and artificial intelligence decision support without institutional interference. Self-sovereign technology enabled by blockchains can help fix the broken market in healthcare.

Delivering value in healthcare: more accurate and complete healthcare records for better healthcare decisions

A patient-controlled independent health record shifts economic power to physicians who interact directly with the patient, even if a hospital or medical group employs them. An imaging center, lab, pharmaceutical company, or device vendor can communicate directly with the prescriber and the patient-owned health record. Patient-provider integration is no longer mediated by hospital EHRs, clearinghouses, or data brokers.

This direct relationship provides more accurate and complete information to enable meaningful choices. This impacts payers, as well: as we struggle to apportion scarce resources, there is tension between the preference of the patient and the interests of commercial insurers and public payers such as Medicare, Medicaid, and the VA. Patient control of the health record is essential for more informed decisions and to mitigate the suspicion of rationing.

Better healthcare decisions can lower costs and improve outcomes

The higher the personal healthcare stakes, the greater the incentive for a patient to pay to control an independent health record. Consider the actual experience of "Alice," a 39-year old mother of 2 diagnosed with ovarian cancer.  At the time of her diagnosis, she was told she could expect to live no longer than 44 months.

Alice is a cancer scientist herself and decides to do what she can to beat the odds. Over the space of 3 years, Alice repeats a cycle of having the genome of her tumor sequenced after each cycle of therapy, sharing that and previous tumor genomes with a multiple oncologists as well as with all of the cancer research data scientists willing to process it.

After each treatment and tumor response cycle, high-stakes decisions around the next cycle must be made again. There are choices of immunotherapy vs. cytotoxic chemo, multiple drugs in each path, combinations of drugs, and the worry that a choice of cytotoxic chemo for one cycle will reduce the effectiveness of immunotherapy during the next cycle. In addition, new research, new protocols, and new therapeutic agents become available every few months. Each oncologist recommends different treatment options at each step. But the final decisions about her next treatment cycle are up to Alice, and time is not on her side.

Three years after her diagnosis, Alice looks good and her cancer appears to be under control. She is asked her advice for the next patient beginning her journey. Without hesitation, Alice says: “Each time you get a laboratory or tumor test, take all of the raw data away immediately on a flash drive, add it to your record, and share it with as many doctors, researchers, and drug companies as are willing to look at it.”

Without ownership of her health record, a patient is at the mercy of various providers who often have incomplete or inaccurate information.  Different providers may repeat tests or re-challenge her with treatments she may already have tried. Fragmented information makes second opinions less useful and ultimately narrows her options.

When her health record travels with her, rather than with an institution, she or her physician can seek second opinions with confidence, knowing that every provider will have a complete and accurate history.  This will open the door to a greater choice of treatments, and allow her to maintain closer control of out-of-pocket expenses.  

For the 5% of patients who account for over $100,000/year of healthcare costs, a patient-controlled independent health record has sufficient economic value that payers and physicians should recommend it and use it.  Savings and outcomes will be transparent and readily quantifiable.

Who will drive use?

Patient controlled independent health records will be driven by physicians, device vendors like Apple, a growing list of labs and service providers, and patients who are invested in getting efficient, optimal care.

The cost of Independence is small

Patient controlled independent health records should be very inexpensive.  Hosting, tech support, and the creation of the patient-controlled health record can be supported by a nominal fee paid by the patient or their insurer. The software itself is open source to ensure that the patient and provider are not locked-in by a vendor. A blockchain token linked to hosting, support, and investment can drive adoption of the patient-controlled independent health record.

Show me the money: using blockchain tokens to pay for patient services 

The patient buys fungible health tokens and distributes them to the hosting and support services for their health record. The separation of support from hosting contributes to independence as the support organization can facilitate switching from one host to another.

Public Blockchains Enable and Complement Private Health Records

The Token Drives Consensus

Ongoing token sales for an open source health record project are expected to attract developers as well as investors. Payment for hosting and support denominated in a health record token (rather than a general currency like Bitcoin) would look like an in-app purchase on today’s App Stores. A fraction of the token value would go to the operator of the token to support development and repay early investors. As with an app store, participation by developers is voluntary.

A successful open source health record token will be expertly managed by doctors for doctors, and will appeal to a large number of patients.

Where are we today: HIE of One status and next steps

HIE of One is the industry’s most experienced patient-centered health records team. We also have the only standards-based open source health record and the only one integrated with the leading blockchain ID and credentialing app. HIE of One has secured a high-visibility pilot in Austin, TX that gives us access to more than 300 physicians and over one million patients.

Investors in HIE of One are funding development in support of the pilot and marketing activities to develop other health information exchange installations, laboratory and direct medicine partnerships, and outreach to cancer and mental health patient groups, among others.

Investors are also funding the introduction of a health record token in a coming version of the open source health record.

Please see the White Paper for a technical description of the HIE of One patient owned health record, and feel free to provide your email address to receive updates.


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