New “international face” for SNOMED terminology

June 2007
Feature Story

Anne Ford

It wasn’t exactly television’s globe-spanning reality show “The Amazing Race.” But for Kevin Donnelly, vice president and general manager of the CAP’s newly formed SNOMED Terminology Solutions division, and Martin Severs, MB, FRCP, FFPHM, chair of the United Kingdom’s National Health Service Information Standards Board and associate dean of clinical practice at the University of Portsmouth, it probably felt like it. “We truly did go around the world,” Donnelly says.

In November 2005, the two traveled with other NHS and CAP staff to the United Kingdom, Hong Kong, Australia, and Washington, DC, speaking to representatives of government health agencies. Their mission: to recruit potential members of a proposed international SNOMED standards development organization that would assume the intellectual property rights of SNOMED CT and its antecedents. “I and Martin were charged with the task of going out and trying to recruit countries to come on board with this whole effort,” Donnelly says. “That was a fairly daunting task. What we were proposing to develop was really a mini United Nations.”

Less than two years later, those efforts have paid off—and no one’s banged a shoe on the table à la Nikita Khrushchev yet. As the CAP announced April 26, a new nonprofit society called the International Health Terminology Standards Development Organisation, or IHTSDO, has acquired the ownership of SNOMED CT for $7.8 million. In turn, the CAP’s SNOMED International Division has changed its name to SNOMED Terminology Solutions and its purpose to SNOMED CT education, training, and consulting. The agreement represents a major step in the international adoption of SNOMED.

It’s a milestone not lost on CAP president Thomas Sodeman, MD. “All of those people that spent so many years of their life working on this product and developing it—they, as well as the College, need to really feel proud of what they’ve done,” he says. “The College has given a very significant element of the international medical record to the world. I can’t think of any other medical society that has done something similar.”

Raj Dash, MD, assistant professor of pathology at Duke University Medical Center, Durham, NC, is chair of the CAP’s SNOMED International Standards Board Executive Committee and vice chair of the SNOMED International Authority Committee. He also served on an ad hoc committee Dr. Sodeman created to oversee the process of negotiating with potential IHTSDO members. The time was ripe for an organization like IHTSDO to form, he says.

“With the adoption of SNOMED as the de facto standard in both the United States and the United Kingdom, there, I think, was growing recognition worldwide of the potential utility of a single reference terminology for medicine,” Dr. Dash says. “The exciting thing now is it’s at a threshold where there’s the potential to expand use, acceptance, and adoption by an order of magnitude.”

For practical as well as philosophical reasons, the IHTSDO is based in Copenhagen, Denmark. Denmark’s National Board of Health was already familiar with SNOMED CT, having considered adopting it for a number of years. In addition, “Danish laws were such that we could create a nonprofit organization that could operate fairly effectively,” Donnelly says. Then, too, “if we were going to make this global,” he adds, it was vital to “get the legal structure outside of the United States or the United Kingdom” and “show an international face.”

The nine charter members of the IHTSDO are governmental health organizations from Australia, Canada, Denmark, Lithuania, the Netherlands, New Zealand, Sweden, the United Kingdom, and the United States. Each member country will have its own National Release Center that will serve as liaison to the IHTSDO and the CAP and assume responsibility for distributing and supporting SNOMED CT within that country. The members will also appoint one representative from each country to serve on the General Assembly, the IHTSDO’s highest governing entity, which met for the first time in March and was to meet again June 20. A management board chaired by professor Severs, which will report to the General Assembly, will bear responsibility for the IHTSDO’s management and direction and appoint the association’s executive officers.

Four standing committees will address content, research and innovation, technical, and quality assurance concerns surrounding SNOMED CT. In turn, those committees will oversee anesthesia, concept model, genomics, mapping, nursing, primary care, pharmacy, and surgical pathology working groups. “The idea is that the management board charters the committees so you truly have a participation model. It’s not meant to be a bureaucracy,” Donnelly says.

Ulrich Andersen, MD, MPA, leader of the Denmark National Board of Health’s terminology project, chimes in, “Whatever we do, we are going to do it in a transparent way.” Dr. Andersen will serve as the IHTSDO’s interim CEO for the next six months. “We believe that by having open processes around how we work with the terminology, that is the best way of giving people an impression of what we do.”

One of the chief obstacles in the IHTSDO’s formation was that “the bureaucracies of the different countries are very different,” Dr. Andersen adds. “We are so many people from so many different legal backgrounds and legal traditions.” In creating the organization’s articles of association, “we ended up with something that is almost a treaty. I think that is an achievement in itself.”

“We’re already taking a fairly complex issue on a one-country level and taking that to multiple countries,” Donnelly agrees. He says funding was another major concern among potential members. “We wanted to come up with some sort of metric that would cause the allocation of cost to be considered fair and equitable,” he says. “We used a measure from the World Bank called GNI to allocate costs of the IHTSDO based upon a country’s wealth. So the very wealthy countries have a much larger burden, and when you get down to the least wealthy member, Lithuania, their fee is something like $7,000 a year.” And “wealthy countries can petition the IHTSDO to be able to deploy SNOMED CT in a nonmember country,” he points out.

An additional challenge, says Dr. Dash, was that “there was a question in many people’s minds of whether SNOMED was up to the task. A lot of that had to do with not really recognizing the potential capability of SNOMED because of the stage of development it’s in, which is really very early in the sense that there are not many vendor systems that implement it to its full capacity.” That, he says, made it “somewhat of a difficult sell to demonstrate the return on investment that a country would receive for coming on board with SNOMED. The fact that there was no alternative, I think, made it a little bit easier.”

He hopes that in the future, vendors will “recognize the increased visibility that SNOMED has and really devote more dollars to developing the software that needs to wrap around it to recognize the benefits in physician support systems, order entry, reducing medical errors, traversing geographic and language boundaries, having a portable medical record, fostering personalized medicine. These are all functions that, I think, many will claim are coming to health care not just in the United States but worldwide, and SNOMED facilitates all of those.”

One of the questions the IHTSDO will face is how to maintain the integrity of SNOMED’s core information while allowing member countries to develop extensions to that core that reflect their unique needs. Says Dr. Dash: “There’s a real need to allow localized developments that funnel up through a hierarchy into a core that can then be redistributed in a fashion that’s not chaotic, but rather systematic and organized. This is a challenge that will face the new SDO—how to scale to a worldwide terminology development platform rather than being focused in Chicago.”

Under the terms of the CAP’s contract with the IHTSDO, the College will support the IHTSDO’s operations for at least three years. “Individuals will develop concepts that have to be translated into the appropriate nomenclature,” Dr. Sodeman says. “The process of doing that, under the contract, will be part of the responsibility of the College. The College then, on a periodic basis, will release a new set of terminologies, which will include the newly developed ones. At the same time, the College maintains the ability to generate its own products, not to make a duplicate of SNOMED, but to utilize the terminologies that were in SNOMED to develop product lines that we might sell or contract with other organizations to develop.”

At CAP TODAY press time, the IHTSDO and the CAP were in the midst of a “transition week” of meetings held in Evanston, Ill., during which the IHTSDO’s management board members were beginning to map out plans for the future and the CAP working groups that have supported SNOMED in the past were issuing their final reports. Strategizing about the best ways to attract new member countries is a high priority—not just because “the more the merrier,” Dr. Dash points out, but because “the more members there are, the easier it is to continue to support the enterprise.”

“I’m excited that this meeting is happening and we’re getting things launched,” Donnelly says. Like everyone else involved with the formation of the IHTSDO, he’s doubtless looking forward to getting some sleep, too. Over the last several months, the seven-hour time difference between Denmark and the United States has made for some inconveniently timed conference calls. “I’ve spent many late evenings on the telephone in the last half year,” Dr. Andersen says. “There were so many night hours. But it has been worthwhile.”

Anne Ford is a writer in Chicago.