Healthcare Data Atherosclerosis and the AI Pipe Dream

“It’s hard to think of anything that doesn’t have a computer in it, except cows. And they’ve probably got computers in them now.”

- Philomena Cunk, Moments of Wonder

The dream of data sharing

Back in the early 1980’s when Judith Faulkner launched what would become the Epic electronic medical record (HER) platform the dream of having healthcare data at everyone’s finger tips was a bright shiny object on the not-so-distant horizon. Since then, the Centers for Medicare & Medicaid Services (CMS) enacted the Interoperability and Patient Access Final Rule in the hopes to encourage sharing healthcare data across all stakeholders. Additionally, the 21st Century Cures Act created the Trusted Exchange Framework and Common Agreement (TEFCA) to craft a national framework for health data sharing.

Add AI and hope for a different outcome

Today, if a health tech or healthcare company does not claim to have some AI based product or service, they are falling behind their competitors. But garbage in/ garbage out remains a fact of life. Large language models (LLMs) trained on data from the broad internet offer an object lesson in what can happen when quality data is not made available to AI platforms.

Health tech companies building products and services on limited healthcare data sets are not likely to produce a product delivering much value. That is why the “FANG” corporations are diving deep into health and wellness consumer products to build their own proprietary data health information data bases.

The dream

TEFCA facilitated the launch of a national network of Qualified Health Information Network(QHIN) data exchanges. These exchanges aggregate data from public and private payers, public health agencies, hospitals and providers. The data is intended to be made accessible to all participating parties, as well as individual consumers and private health tech developers. The rollout of this network is on-going, participation is voluntary and some level of health data is available to those that join a QHIN.

The reality

Almost 50% of US consumers have private health insurance, either through their employer or via direct purchase. Health insurance carriers who sell this type of insurance view their internal health data as proprietary and are loath to share it with outside organizations. Regulatory required data is reported to QHINs, state and Federal agencies; and basic insurance benefit information is shared with consumers. If the health insurance company is co-owned by a healthcare delivery system, then typically health data is shared across the enterprise. The same may be true with strategic healthcare delivery partners such as joint venture physician practices.

Unaligned hospitals and providers may have healthcare quality data shared with them by commercial payers, but not likely much more than that. There may be some data sharing between payers, providers and public health agencies, often limited to Medicaid and Medicare data. Health tech developers are left to glean what data they can from QHINs, state and Federal sources, and potentially from non-traditional healthcare data bases. And consumers are pretty much out in the cold and on their own.

A step in the right direction, but…

The QHIN network initiative set out with the goal of broadening access to valuable health data in the hope of driving innovation and breaking down barriers. But the initiative could not shift the financial incentives baked into the commercial healthcare marketplace. Payers and their aligned providers have material financial incentives not to share data they view as proprietary, which is the most valuable data to innovation.

While the health tech innovation space is full of companies offering all types of AI solutions, if they are not building on high value data from payers and providers they are unlikely to achieve the dream of seamless healthcare data integration.

Copyright 2itive 2024

2itive is a Portland based consultancy founded by Erik Goodfriend, offering a unique combination of market intelligence, knowledge of healthcare payment systems and creative business strategy insights. Feel free to contact us at info@2itive.com