Is It Time to Dismiss the Data Gatekeepers?

There are certain moments that have a profound impact on you. For me, one of those moments for me came in 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 tradeoffs 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 person at the table) made an interesting case, saying that Facebook has shown us that people can’t be trusted with their health record, and that it is our responsibility to protect them from themselves.

I was not actively engaged in that conversation. Everyone in the conversation let it wash over and moved on. 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 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, and 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. How much worse could the patient do?

The digitization of healthcare has created data barons. A term used to describe the captains of industry that 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 (you know their founders and leaders by name). In our context, they are Epic and Cerner, among others such as large imaging systems. 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

That’s where CMS comes in. By making changes to the EHR incentive program, CMS hopes to:

• Make it more flexible and less burdensome
• Emphasize measures that require the exchange of health information between providers and patients
• Incentivize providers to make it easier for patients to obtain their 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

Below are some of the proposed change highlights:

• MU has been renamed Promoting Interoperability Programs to highlight its new focus
• Patients will be able to access records 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
• It will remove 19 measures from the quality program 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

Why This Matters for Health Systems

It’s CMS, so of course this matters. But it also has bipartisan support, which is important. Shortly after Seema Verma and Jared Kushner spoke at HIMSS, responses came from former Vice President Joe Biden and Aneesh Chopra, who served as CTO under the Obama administration. Both praised the proposed move and even encouraged 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 is created when there is transparency on price and outcomes, as well as a corresponding ability for patients to have a choice. 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, as would innovators, who have been hampered by the gatekeepers of data for years.

The momentum is building, the direction is clear.

The next move for health IT is to identify the architecture for sharing data securely with patients, providers, and the innovator 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 10 years after it starts. Healthcare digitization started in earnest in 2008 — we are now at the point of disruption.

This piece was written by Bill Russell, a former CIO at St. Joseph Health who now serves as CEO of Health Lyrics, a management consulting firm. To view the original post, click here. To follow Russell on Twitter, click here.