Reinstating patients as a stakeholder in their healthcare

What if you could subsidize the cost of your healthcare with the value of your medical record data? Of all the possible benefits of digitizing medical records, distributing the value of that data back to patients might be the most important and impactful for addressing some of the biggest problems in healthcare.?

Virtually every healthcare conversation I observe or participate in recognizes healthcare is suffering from major problems. Misaligned stakeholders, unaffordable care, burned out doctors, healthcare profiteering, disengaged patients, and inaccessible data, are just some of the common topics of discussion. But I rarely hear people talk about the importance and value of data as the solution.?

Healthcare is unique. Most of the time it seems we focus on data privacy and the regulatory landscape as what makes healthcare unlike other industries. I disagree. I think it’s myopic (and even a little dramatic) to believe that somehow our healthcare data has more significant privacy and security concerns than say our banking data? Location data? Consumer history? Browsing history? What would you rather a hacker/criminal have: your address and frequently visited destinations or a handful of x-rays you had taken 10 years ago??

I’m not saying healthcare data doesn’t have significant privacy and security concerns; it does. I’m saying we are overly paranoid about it and strangely loose with other types of personal data. In other words, our perception of data privacy by category is skewed, out of balance, and inconsistent with actual privacy and security.?

Consider the results of a study from 2018, which found that everyday there are at least two breaches of PHI of 500 or more records.[1] That’s nuts. In the common vernacular, healthcare data is wildly insecure. Can you imagine if the banking industry had 1000 or more accounts breached every day? The system would collapse, no one would trust the banks, and we’d devolve into a barter system and anarchy.?

We’ve all heard the saying about death and taxes. Our brush with healthcare is just as inevitable, which makes us each true stakeholders in healthcare. But most patients are strangely apathetic. Why is that?

I love this example from a parenting book I recently read about a family economy.[2] Consider the 10-year old boy who comes home from school with only one shoe. His father asks him where his shoe is to which the boy shrugs and says “I dunno”. The father is understandably flummoxed by his son’s seemingly uncaring attitude regarding the state of his son’s footwear. Doesn’t the boy understand high quality shoes protect his feet? Doesn’t he understand that the shoes are a resource and must be paid for? Doesn’t he appreciate the implication of not taking good care of his things? Well, no, of course not. The boy knows that a new pair of shoes will magically appear because mom and dad won’t possibly send their boy to school without shoes.?

How do you fix this? You establish an economy and allow the boy to participate in the acquisition of his things. If he does chores to earn money to contribute or even completely buy his own things, his mindset shifts and his incentives change in fundamentally crucial ways. He has a stake in the quality, style, care, and maintenance of resources that previously he didn’t care about at all. (This works by the way, we use it with my seven-year old daughter.)

Patients in healthcare are like the little boy. The acquisition and state of their healthcare data is like the acquisition and state of the little boy’s shoes. The answer is to create a healthcare data economy.?

This economy already exists in several forms. Some are old and fundamentally misaligned with patient access and interests; some are new and much closer to what could revolutionize healthcare by reinstating patients as a stakeholder in their healthcare. The old model is the monolithic EHR vendor/siloed data model. EHR vendors are being dragged kicking and screaming by government mandate to share data and provide patient access. But the data is low quality and cripplingly fragmented across healthcare institutions. We have mountains of evidence that EHR vendors are not going to ride in and save the day. If they were, they’d have done it already.?

Emerging technologies have enabled fascinating new ways to ensure data privacy and security while enabling granular patient control over data sharing and access. Patient control over unfragmented medical records creates a new opportunity for a healthcare data market economy designed to, like the little boy and his shoes, fundamentally shift their mindsets and incentives with regard to their healthcare. Funneling the economic value of healthcare data back into the patients pockets will drastically realign healthcare with the patient’s best interests.?

The best way to describe this emerging marketplace is a token economy powered by blockchain technology and decentralized networks (often referred to as web3). If you’re skeptical of blockchain, look past the crypto craze and understand the power of immutable distributed ledger technology. Dig a bit deeper and you will find a thriving and vibrant community of healthcare web3 protagonists striving to democratize healthcare data. There are some impressive initiatives leveraging web3 technology to remake a complicated healthcare data landscape that, in the name of privacy and security, currently languishes in outdated technology and inaccessible data silos that are neither private nor secure.?

Imagine the impact of a passive revenue stream that could be used to offset the cost of your healthcare. It’s like an HSA on steroids. Your healthcare data would effectively become an investment. As such, you would care about it’s quality, completeness, and performance. This is how patients are reinstated as stakeholders in their healthcare; the monetary value of their data must be diverted back into their pockets.?

In addition to addressing the healthcare affordability crisis, diverting the value of healthcare data back into the pocket’s of patients will enable physicians to provide better care to their patients. Instead of working off of incomplete, fragmented patient charts, they will work off of whole medical histories. Patients authorize all requests to access or buy their data which largely removes the burden of mitigating HIPAA compliant sharing from providers' shoulders. Whole medical records that revolve around incentivized patients will drive true innovation where current market stewards have fundamentally failed and sometimes actively stifle innovation. Medical discovery will become a function of high quality data availability and patients will reap the profits both economic and medical.?

The most common negative response I hear to such a data market economy is that things are a certain way and they will never change. To me, that sounds like capitulation, lack of vision, or both. The healthcare “ship” so to speak, is sinking. We can’t keep patching holes in the hull with HIEs and more centralized (fragmented) initiatives that continue to keep patients at arms length. We have to start loading life rafts and properly incentivizing patients to engage in a healthcare economy that will literally be better for everyone in every way. Sunk cost bias (pun intended) makes it easy to continue down the path our current inertia is taking us. We just need to be clear that right now, that path leads to the bottom of the ocean.?

Creating this data economy is going to require enormous collaboration. Not just to overcome the bad actors and healthcare profiteers, but to stand up and breathe life into a healthcare data economy that will quite literally remake the healthcare landscape. Proper regulation, privacy and security, seamless data accessibility, patient control, provider EHRs, low barriers to innovation, among others all have to be considered and included. Patients, physicians, technologists, regulators, government officials, quite literally everyone has a very real incentive to help get this right.?

This is AI Medica’s mission, to reinstate patients as stakeholders in their own care. It’s the only way we right the ship.

References

1. Healthcare Data Breach Statistics. https://www.hipaajournal.com/healthcare-data-breach-statistics/ (2021).

2. Eyre, R. & Eyre, L. The Entitlement Trap: How to Rescue Your Child with a New Family System of Choosing, Earning, and Ownership. (Avery, 2011).