Can Blockchain Stop Patients from Paying for Their Own Medical Record Data?

Senate Bill 3530 Gives Many Companies the Right to Sell Patient Data

The United States Senate is considering a Bill that would allow third parties HIPAA covered access to patient medical records just like a hospital or doctor. Patient rights to privacy are under direct assault from hackers and now this activity will be sanctioned by the United States Government and codified into law. S. 3530 is the Senate Bill that will allow third parties, including clearinghouses, to legally sell patient data to other parties, including the actual patients that created the data.

Proponents of the bill will argue that current systems produced for doctors, providers, hospitals, and health systems do not meet the needs of patients. Companies such as Apple, Google, and Facebook will be allowed to enter the arena of healthcare data and buy up gobs of patient information to “science the data” in different formats for enhanced user interfaces and patient experiences. Patient data will be on sale in every market to find better ways to personalize brand offerings to an individual consumers reported health condition. The wording in the bill would extend HIPAA “covered entity” status to companies that have NO direct access to the patient in “any way shape or form.” Proponents may also paint a scenario that patients are “actually” better served when the data is aggregated by “innovative” third party organizations.

Imagine an Amazon Echo being able to query AWS for information about a cough medicine prescription a patient had filled at Walgreens. Now, Imagine the Echo using this information when noticing voice pattern fluctuations and recommending a refill authorization of the prior medication. Integrating patient data into the foundation of consumer facing products could be create “ground breaking” tech that could ultimately benefit patients. Companies have already delivered products that address various faces of integration with Alexa and other products.

Maybe giving Amazon and Google Rights to Patient Data will Create Innovative Products?

Given the current state of patient user interfaces and interoperability, the possible entry of new competitors in the patient record marketplace could sound like a “good thing.” In fact, over 2 million people have already voted with their wallets and allowed 23andMe to have access to private genetic data, so what’s the big deal about legalizing the sale of even more patient data?

The ONLY problem with this picture is: “It’s the patient’s f$cking data!”

But, the reality is that it doesn’t matter to the “patient.” No patients are boycotting hospitals when their personal data is hacked. Patients have not protested in front of insurance companies about lapse data security and HIPAA has strangled any patient opportunity to sue over misuse of data by denying an individual’s right to state a claim.

Have Patients Surrendered Already?

The patient has already surrendered their rights to their own data in existing systems and they are paying for the privilege to view their own data in electronic medical record systems (EMR) from Epic, Cerner, and AllScripts. There may not be an actual line item that states a price for “ View Your Data,” but copays, premiums, taxes, etc.…. guarantee that a patient ultimately pays.

As noted by Adrian Gropper, the Senate Bill is named; “Ensuring Patient Access to Healthcare Records Act of 2016,” and will be the final nail in the coffin guaranteeing that patients no longer own or control their medical records. Even the passage of patient privacy and ownership laws has had little effect on the business practices of pharmaceutical companies, insurers, and hospitals. New Hampshire is the only state in the United States that has codified patient ownership of medical records, yet there is no indication that business has even recognized this right to ownership.

Other Entities are already Claiming Rights to Patient Data

Multiple groups have already laid claim to the patient record, and have flatly pointed out the fact that patients should share the medical record data with groups that actually support the creation of the data. Hospitals, clinical laboratories, doctors, and pharmaceutical companies have helped create an medical data infrastructure that supports the collection of data. Don’t these entities deserve a piece of the pie? Does the Uber driver that takes the patient to a doctor’s office deserve a piece of the action, even if only a micropayment?

Patients have been complaining about patient portals and interfaces for a long time, yet hospitals and health systems continue to buy Epic and ignore patient input.

Patients have demanded their data, but the industry continues “forward….”

Patient rights are being trampled everywhere, and will continue to be diminished as artificial intelligence invades every aspect of the care continuum. There is no question that artificial intelligence will benefit patients in ways that have yet to be quantified, but this benefit will come at a severe cost to the question of ownership of data unless patients become active in management of their own health record. In most cases, data is already aggregated in ways where pharmaceutical companies already know which patients a doctor should be prescribing medicines, before the doctor appointment even happens.

The company closely tracked key details, such as the number of tests ordered by physicians in their core markets. And sales staff passed around intricate spreadsheets, with thousands of rows each, on potential patients, including details such as birthdates and information about symptoms, doctor, and hospital. In some cases, patients were identified by their initials.

I know people that still believe the Supreme Court is going to overturn the election of Donald Trump as President. If something is not done soon, these people will join the many people who advocate for patient control of records, and everyone will wonder what went wrong? In fact the very idea of ownership of patient data, and in fact choice itself in healthcare, may just be an illusion as stated by Colin Hung.

The Blockchain will Bring Control of Medical Records back to Patients

Enter the Clinical Blockchain

It is probably too late for any Blockchain to solve the information security and ownership issues of patient records in the current healthcare system. But, there are certain instances where a Clinical Blockchain can reestablish ownership of patient data by the patient. The “holy grail” of medical records data will need to integrate patient generated data. The value of the existing patient data in systems like Epic and Cerner are increased by orders of magnitude when patient information including qualitative assessments and quantitative sensor data is added to the record. A patient focused Blockchain can be the vehicle that allows integration and control of patient generated data along with the medical record silos to be referenced on a single secure Blockchain.

The specifics about onboarding patients information to a clinical Blockchain and creating an “Nof1" will be detailed in an upcoming whitepaper.

Edward Bukstel

Clinical Blockchain