Digital Healthcare Dystopia

Like many of our episodes, this topic drives our hosts to use some salty language. Use your best judgment if you’re listening near someone with tender ears.

Hike up your trousers and throw on some long socks. We’re getting into the weeds on this one. Ben and Gillian discuss the digitization of our healthcare system and its far-reaching impacts on data privacy and patient health outcomes. We trace the rise of Electronic Health Record (EHR) management systems and the corresponding $13-billion-per-year industry that emerged in the wake of the Affordable Care Act. Electronic systems that were meant to “modernize” the healthcare industry have actually led to rampant inefficiency, inflated costs, and negative health outcomes for patients. Big Healthcare and Big Tech – it’s a match made in hell!

Show Notes

History of Electronic Health Records

Prior to the ACA, the HITECH Act (Health Information Technology for Economic and Clinical Health – part of the American Recovery and Reinvestment Act of 2009) created huge financial incentives for providers to transfer to EHRs. Incentives worked – in 2008, 9% of hospitals used EHRs; in 2019, 96% of hospitals use EHRs.

Medical data underwent a massive transformation after the passage of the ACA in 2010. Under the ACA, the federal government invested around $36 billion to incentivize creation of Electronic Health Records (EHR) systems. The intent was to modernize and “digitize” healthcare industry by improving patient access to information, coordinating care, and reducing disparity between healthcare providers by providing access to information.

Now, more healthcare data is being collected than ever before, but the systems for actually MANAGING that data are a huge mess.

Digitization could have created a much more efficient system – if it had been centralized, as it is in countries where they have a single-payer healthcare system. Many countries that have single-payer healthcare systems also have one universal electronic records system.

Instead of one streamlined system for managing medical records, a myriad of different EHR “vendors” flooded the market post-ACA, resulting in a patchwork, Frankenstein system where there are many different databases holding people’s medical records, none of which are interoperable.

This is massively infuriating, inefficient, and bad for patients. Just ask Joe Biden – he agrees!

At a 2017 meeting with health care leaders in Washington, he railed against the infuriating challenge of getting his son Beau’s medical records from one hospital to another. ‘I was stunned when my son for a year was battling stage 4 glioblastoma,’ said Biden. ‘I couldn’t get his records. I’m the vice president of the United States of America.  … It was an absolute nightmare. It was ridiculous, absolutely ridiculous, that we’re in that circumstance.’

Why are American EHRs so bad?

In countries with national health programs EHRs are built to drive better quality care. In the American healthcare system, EHRs’ #1 priority is driving profits. This means that EHRs were not created to support many of the things that physicians, patients, and policymakers value: better care experiences, reduced costs, or improved care quality and population health management. They were not created to make physicians better diagnosticians or more cost-effective prescribers. The reason: our health care system has mostly not rewarded these activities. They have not been mission-critical for providers or, therefore, EHR designers. 

What are the negative effects that digitization/EHRs have on patients and physicians?

  • Clinician busywork: In one study, physicians reported that they spend 4.5 hours per day completing electronic health records – time that could be spending tending to patients.
  • Opportunity for fraud: EHRs are really optimized for billing, NOT for patient care, and have made it easier to engage in fraudulent “upcoding” (bill inflation). If you’re not sure why upcoding is bad, see our episode on Medicare Advantage plans, who specialize in coding you with fake illnesses that allow them to charge higher prices to Medicare. 
  • Data privacy: Our medical records contain the most intimate details about our lives. In 2015 alone, 113 million individuals were impacted by breaches of EHR data.

Where have we seen these systems having negative impacts on patients?

Ben, someone who works on health policy for a living, describes how he couldn’t even get his own health records in order to support a family member’s health.

But even when the system works the way it should, it doesn’t work so well:

First, the story of Annette Monachelli: Annette went to the doctor multiple times complaining of head pain typical of a brain aneurysm. Her physician ordered a brain scan, but the lab never received the order due to a bug in the EHR. She died days later.

  • The company who created the EHR, eClinicalWorks, was the subject of an official federal investigation in 2015 which revealed that the whole thing barely worked. The software failed to detect negative drug interactions, could not reliably order lab tests or diagnostic images, and would accidentally display notes for the wrong patient profile causing the wrong drugs to be prescribed.
  • eClinicalWorks paid a $155 million settlement to the government, but is still fully functional and profitable to this day

Consider another story, of Fabian Ronisky: a young man is suffering from severe headaches and fever. His doctor suspects meningitis and orders a spinal tap through the hospital’s multi-million dollar EHR system (the system was run by Epic Systems Corp, which as of 2019 stored medical records for 78% of patients in the US).

  • The Epic EHR software cannot fully “interface” with the lab’s software, so the order for the spinal tap is never sent to the lab. Fabian’s diagnosis was thus delayed by days, during which time he suffered irreversible brain damage

What regulations govern the use of EHRs?

HIPAA and the HITECH Act are intended to guard patient privacy and ensure that data is secure. However, there are many policies designed to keep privacy violations and software failures out of public view and make it impossible to enforce these regulations.

EHR vendors often impose “gag clauses” on their buyers to discourage speaking out about safety issues/problems with software. Lawsuits against EHRs most often settle out of court with strict confidentiality pledges. And EHR vendors frequently have “hold harmless” clauses that protect them from liability if a hospital is sued for medical error.

But the real payoff is that if we had Medicare for All, we could have one unified system.

Passage of legislation creating uniform health records could be a good incremental win on the path toward Medicare for All.

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Further Reading:

EHR Adoption and Health Care Reform Authored by the AAAAI and ACAAI Joint Task Force on Health Care Reform, April 2011 

ACA at 10 Years: Innovation in Data | Colorado Health Institute 

How President Obama shaped the future of digital health | TechCrunch 

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