The Unsung Heroes of Healthcare


February 8, 2019

Ever wonder who’s responsible for building cars for the healthcare information highway? How the information needed for patient care and billing make it into a healthcare transaction? Who it is that creates health data standards, how they’re developed, and why they’re important? We think now is the perfect opportunity to thank those responsible for the electronic data and transaction standards used in moving healthcare data around the world.

We sat down with Cognosante’s Mary Kay McDaniel, principal of healthcare data standards, to talk about U.S. standards development organizations (SDOs) and data content committees (DCCs)—who they are, and how they make a difference.

A quick history

You may remember life before standardized healthcare claims and electronic data interchange standards. Who can forget writing, and then eventually stamping, every page of a patient’s paper medical record? Or ordering charts, obtaining practitioner signatures, and conducting final reviews? How about sticking product labels on supply cards that would eventually be entered into the patient accounting system for billing purposes?

The most important device in an office became the copy machine. Everything was documented on paper and everyone had their own way of capturing information. Sharing information was hard. It meant making a copy, putting it in an envelope, and mailing.

Now, fast forward 25+ years. DCCs, working together with SDOs, were able to develop and implement standardized forms and electronic transactions to replace paper processes. A once “wild west” marketplace saw value in standardization, electronic health records (EHRs), and the need for interoperability—a top priority for providers, payers, and other key industry stakeholders.

It all boils down to the data

According to the Office of the National Coordinator, “standards are agreed upon methods for connecting systems together. Standards may pertain to security, data transport, data format or structure, or the meanings of codes or terms.” In U.S. healthcare, DCCs and SDOs create, define, update, and maintain health standards through collaborative processes that involve health information technology users.

In the United States, there are six Designated Standards Maintenance Organizations (DSMOs) named by the Secretary of the Department of Health and Human Services. Three American National Standards Institute-accredited standard development organizations: X12, Health Level Seven International, and National Council for Prescription Drug Programs, and three data content organizations: Dental Content Committee of the American Dental Association, National Uniform Billing Committee, and National Uniform Claim Committee. Each DSMO has its own member and processes to go about creating the standards we all use today.

Standards organizations help communicate data, not influence it. Do you remember your first colonoscopy? You probably remember the procedure but fail to recall the details. When did it take place? Where? Who performed the procedure? What was the outcome? What codes were billed? These are the kinds of questions EHRs help answer so individuals don’t need to remember the details.

To make information flow across healthcare organizations, small groups of individuals across the U.S. healthcare industry gather at DSMOs to create standards that enable data sharing. By standardizing format and meaning, and providing world-class reference implementations, it’s easier for practitioners to make informed decisions.

Quality data helps tell a more complete story. You can easily understand what has or has not been done, what worked well and what didn’t, and why. “Without standardization, data becomes harder to share, exchange, and understand. If it isn’t validated, and if syntax and context are missing, you have questionable data,” said McDaniel.

The minds behind standards organizations—who are they and why are they so special?

“The majority of the people who make up health data standards organizations are volunteers,” explained McDaniel. Some are supported by the organizations they are employed by, and others participate as individual contributors paying their own way. A smaller group are consultants who understand how the DDCs and SDOs work and are paid to participate by organizations who want a standard created. An even smaller number of these individuals attend multiple U.S. DSMOs or participate in international standards organizations.

Health data standards cross all time zones, so those involved in this work lead a unique lifestyle—one that requires around-the-clock accessibility. “Standards people are up at all times of the early morning or late evening, depending on where they are in the world to join a call. I do it because it’s my way of making a difference in people’s lives,” said McDaniel. “The minds behind standards creation and maintenance deserve our thanks for their tireless work, too.”