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The Patient Can’t be Trusted with Their Health Record. Wait. What?

There are certain moments that have a profound impact on you. For me, one of those moments came during a discussion I was leading on patient information exchange.

Working in Catholic Healthcare you are introduced to this idea of ministry, which quite simply means in service to God and others. That may sound nebulous to some but on this day, I found out from an 80-year-old sister how it applies to the business of healthcare.

I was making the case that there are trade-offs to sharing patient data with the competition that may not be advantageous to the business.  She asked me, “What is in the best interest of the community we serve?”  I answered.  She said softly, “That is why we exist and that should guide us.”

Another moment came last week, while sitting at lunch with some people of influence within healthcare. One person (arguably the most influential one at the table) was making an interesting case: Facebook has shown us that people can’t be trusted with their health record. In their opinion, it was our responsibility to protect patients from themselves.

I was not actively engaged in that conversation. Everyone else at the table let it wash over them and then moved on. However, the idea nagged at me long after. I was left to wonder if this was a generally accepted principle. I don’t think it is.

An earlier version of me might have made a similar case, but honestly, it would have been self-serving. The simple, honest answer? Providers don’t want to share the data because it will make it too easy for patients to move away from their health system. EHR providers don’t want to share the patient record because it will make it harder for them to profit from the data and maintain their hold on the industry. Data brokers don’t want this to happen because they make money from the sale of patient-related information. Insurance carriers also profit from the data and have enjoyed an advantage in negotiations based on their superior understanding of risk.

What is in the best interest of the patient and the community?

I agree that the Facebook situation should give us pause. It demands that we educate the public and provide them with safeguards when sharing their data. However, the idea that my health information can’t be entrusted to me is fairly offensive. It strikes me as arrogant as well as self-serving. In fact, our industry has lost 32.9 million patient records in breach incidents since 2017 alone… how much worse could the patient do?

The digitization of healthcare has created data barons. This term was used to describe the captains of industry who controlled large swaths of the economy during the emergence of the US as an economic world power. There were rail barons, oil barons, and steel barons. That is why we know the names of Rockefeller, Carnegie, and Vanderbilt.

The data barons of today are Google, Amazon, and Facebook, and you know their founders and leaders by name. In our context, they are Epic and Cerner among others, such as large imaging systems.

The patient record data barons… the only thing more powerful than barons is the US government, which happens to be the largest payer in healthcare.

Proposed Changes to the Program Formerly Known as MU

CMS plans to change the EHR incentive program to:

  • make the program more flexible and less burdensome,
  • emphasize measures that require the exchange of health information between providers and patients, and
  • incentivize providers to make it easier for patients to obtain their medical records electronically.

“We seek to ensure the healthcare system puts patients first.  Today’s proposed rule demonstrates our commitment to patient access to high-quality care while removing outdated and redundant regulations on providers.”
CMS Administrator Seema Verma

Here are some of the proposed change highlights:

  • MU has been renamed Promoting Interoperability Programs to highlight the focus of the program
  • Patient Access to Record is available in a downloadable format the day they leave the hospital
  • Hospitals must provide a list of their standard charges via the internet in an effort to boost transparency
  • Remove a total of 19 measures from the quality programs and de-duplicate another 21 measures, while adopting 1 claims-based readmissions measure
  • 2015 Edition Certified EHR Technology (CEHRT) must include API capabilities in order to pass the certification process and CMS reiterated a 2019 deadline

Why This Matters for Health Systems

It’s CMS, so of course this matters. But as we noted on the podcast (This Week in Health IT), this also has bipartisan support.

Shortly after Seema Verma and Jared Kushner spoke at HIMSS, you had a response from Former Vice President Joe Biden and Aneesh Chopra, former CTO of the federal government during the Obama administration. Both were praising the proposed move and even encouraging them to go further with regard to patient record sharing.

Very few initiatives have bipartisan support these days, so that may be an indication of the strength of this position.

Why This Matters for Patients

A market for healthcare gets created when there is transparency on price and outcomes, as well as a corresponding ability to choose on the part of the patient.

Data has the ability to trap patients into a specific provider.  These changes have the potential to make consumers out of our patients.

Our Next Move

Republicans and Democrats alike see this as a good thing. CMS sees this as a primary pursuit. Patients and consumers of healthcare everywhere would like to see this happen. Finally, innovators have been hampered by the gatekeepers of data for years, in pursuit of the next big thing in healthcare.

The momentum is building, and the direction is clear.

The next move for health IT is to identify the architecture for sharing data securely with patients, providers, and the innovation community. A platform is needed to allow for the movement of data through traditional ETL methods, as well as query/response mechanisms such as APIs.

Every industry that has gone through digitization experiences significant disruption at about the 10-year mark. Healthcare digitization started in earnest in 2008. We are now at the point of disruption. Agility is the most important thing an IT organization can provide to an industry facing rapidly increasing change.

Preparing for digital disruption is what Health Lyrics was founded upon. Click the blue button on top of this page to set up a free consultation with me.

Hope this helps. Please listen to our weekly show at This Week in Health IT and check out our 100+ videos with industry influencers on our YouTube channel.