How to track disease in the 21st century

When a patient goes into a hospital or clinic, whether for a heart attack, stroke, or because they walked into a lamp post (yes, really), a massive amount of data is collected and entered into medical reports. This data, which may include the patient’s condition, any procedures that were performed or medications that were given, and the diagnosis, is then turned into a set of codes.

A team of researchers at the O’Brien Institute for Public Health at the Cumming School of Medicine (CSM) are working closely with the World Health Organization (WHO) to update this coding system, referred to as the International Classification of Disease, or ICD, which upon completion will be adopted across the globe.

The O’Brien Institute was recently re-designated a WHO Collaborating Centre for Classification, Terminology and Standards — in large part due to the central role its researchers have played in the development, testing and transition from ICD-10 to ICD-11. ICD acts as the foundation for the identification of health trends and statistics globally, and this will be its first revision in more than two decades. One of those researchers is Dr. Cathy Eastwood, PhD, who is the primary investigator on the largest ICD-11 trial to date — using full hospital records to test the new coding system.

• Photo above:Cathy Eastwood and researcher Greg Hallihan are working closely with the World Health Organization on the 11th revision of the International Classification of Diseases. Photo by Michael Wood, O'Brien Institute for Public Health

“Our study is important because it involves real-world coding based on actual hospital visits. This gave us a lot more information on how to use the whole system, and helped identify many gaps,” says Eastwood, who is also a member of the CSM’s Libin Cardiovascular Institute.
One particular area of interest for Eastwood and her team is quality and safety — ensuring patients receive safe care by providing better data to track patient safety incidents, like falls or hospital-acquired infections.

“We’ve been working closely with the WHO to improve the quality and safety codes in ICD-11,” says Eastwood. “If you can easily review the data on when and where patients are developing sepsis, for example, you can troubleshoot and improve practice much quicker — and the patient is the one that benefits.”

Being re-classified as a WHO Collaborating Centre, which happens in less than 50 per cent of cases, speaks to the high calibre of work the O’Brien Institute has been doing with the WHO on projects like ICD-11, according to Institute Scientific Director Dr. William Ghali, MD.

“A group of dedicated O’Brien Institute researchers have spent the last five years making sure ICD-11 is the most accurate, most versatile, and complete ICD to date,” says Ghali. “This work will keep us engaged with the WHO for a long time, and will directly impact how health care is delivered across the globe.”

Along with rigorous testing of ICD-11, institute researchers are also working to ensure a smooth transition to the new system.

Dr. Mingshan Lu, PhD, is a professor in the Department of Economics at the University of Calgary, and the Department of Community Health Sciences as well as a member of the O’Brien Institute. Lu is working with Eastwood and her team to look at the economic impact of transitioning to ICD-11, and developing a framework for Health Canada to help guide the change, which is expected to happen in Canada in 2023.

Stepping into the digital age

When ICD-10 was endorsed by the Forty-third World Health Assembly in 1990, the Internet was in its infancy. The first web page didn’t go live until 1991, and less than half of U.S. adults reported using a personal computer. In a reflection of the times, ICD-11 is much more a digital product than its predecessor, which comes with a unique set of challenges.

Greg Hallihan, a human factors researcher with the O’Brien Institute’s W21C Program, is one of the researchers working to mitigate these challenges, through usability testing of the new ICD-11 web platform. Hallihan and his team test things like the intuitiveness of the platform’s search function, noting that users often expect search bars to function like Google, or how users’ eye movements reflect different approaches to finding the information they are looking for.

“We wanted to identify the ways in which people are having trouble with the platform, and how to address these issues through design changes,” says Hallihan. “That’s going to support implementation of the tool universally.”

Hallihan adds that making the ICD-11 browser as user friendly as possible could have a massive effect due to its potential reach.

“The WHO is going to be rolling out this platform globally. It’s going to be publicly available to anyone who wants to use it, and so the hope is that you could have someone in a developing health economy, who has never used ICD, successfully use this tool for the very first time.”

In the end, Hallihan says it’s all about ensuring this massive amount of data is standardized, and usable.

“Everybody is so excited about big data — but the data has to be good. Designing a system to be more usable will increase the usefulness of the data that it gives us, which is key if we want to build on it for health interventions and health research.”

ICD-11 was released for a period of user testing in the spring of 2018. The new system will be adopted by the World Health Assembly's member states in 2019, finally coming into widespread adoption on Jan. 1, 2022.

The O’Brien Institute for Public Health was originally named a WHO Collaborating Centre for Classification, Terminology and Standards in May 2015, and re-classified for a four-year term in November 2018. Dr. Hude Quan, PhD, continues his role as the centre’s director, with Danielle Southern providing co-ordination and analytics for WHO Collaborating Centre projects.

Dr. Cathy Eastwood, RN, PhD, is the scientific manager for the data science team within the O’Brien Institute’s Methods Hub, and is the associate director for Strategies for Patient Oriented Research (SPOR) Methods Support and Development Platform.

Dr. William Ghali, MD, is the scientific director of the O'Brien Institute for Public Health, and a principal investigator within the University of Calgary WHO Collaborating Centre in Disease Classifications and health information. He is a professor in the departments of medicine and community health sciences at the Cumming School of Medicine at the University of Calgary and member of the CSM’s Libin Institute.

W21C is a health research and innovation initiative within the University of Calgary’s O’Brien Institute for Public Health and Alberta Health Services. W21C serves as a beta test site for new technologies, exemplary hospital design, and novel approaches to care delivery. With a ‘living laboratory’ (the only one of its kind in Canada) located in Calgary’s Foothills Medical Centre, W21C researchers are able to identify challenges in the health system, and solve problems right at the front lines of patient care. W21C's primary aim is to Make Care Better.