Biomedical/Clinical Research Information Specialist
Enterprise Vocabular Services (EVS), National Cancer Institute Contractor
This spotlight was featured in September 2018.
Jordan leads the Controlled Terminology team.
The views and opinions expressed herein do not reflect the views of the NCI.
How long have you been volunteering at CDISC?
This is my fifth year volunteering with CDISC. I started by working with various CDISC controlled terminology teams, and I have also participated in the development of several therapeutic area user guides.
What should someone new to CDISC know about the Terminology and Traditional Chinese Medicine standards and why was it important to you to serve on these teams?
Controlled Terminology is an important part of CDISC standards. CDISC standards standardize the general structures with which users collect and submit data, whereas Controlled Terminology aims to standardize the data values themselves. Controlled terminologies and ontologies (terminologies with information modeling) are used to clearly represent meaning to both people and computers. Terminologies/ontologies provide the foundation for the representation and the reliable electronic exchange of data, and the ability to extract knowledge from that data. Terminologies also provide a standard language across multiple systems and stakeholders.
Terminology development presents a welcome challenge because terminology best practice dictates that a controlled value should have science-based, precise and stable meaning (one that can withstand time) within the framework of a pre-defined set of rules that can help users to accurately collect, code, and analyze data. Usually, when difficulties are encountered in creating controlled vocabulary to support a specific CDISC-defined data standard, this signifies problems, contradictions, and/or lack of clarity in overall data modeling. In this sense, terminology analysis often helps to inform data modeling decisions. There have been instances in past projects where the analysis of proposed terminology leads to changes in modeling which ultimately leads to changes in the TA User Guides that are developed for each project. I believe, good and well-considered modeling facilitates sound terminology development, and the reverse certainly holds true as well.
To those of us who are trained in western medicine, the practice and study of traditional Chinese medicine (TCM) are both fascinating and incredibly complex. “Western/Modern Medicine” was introduced and began to gain popularity in China around the time of the Opium War (mid-19th century), prior to that event and for five thousand years, traditional Chinese medicine was the leading force and the only medical care in China, with little to no influence from the West. TCM is also a “practical” medicine built almost entirely on experience, with an emphasis on observational, subjective experience; this demarcates many significant differences between TCM and western medicine. I think while CDISC standards have the capacity and tools to meaningfully represent TCM data and aid efficient data analysis and reporting, it is of vital importance to have a better and comprehensive understanding of TCM theories, principles, diagnostic techniques and established criteria – this understanding will be immensely helpful in shaping the development of practical and useful TCM standards.
How did you get into working in clinical research?
Medicine and science have always fascinated me and I am an inherently curious person. I studied pre-med as an undergraduate and have a doctoral degree in pharmacology from Georgetown University. A career in clinical research seemed to be the natural fit for my strengths.
What is the craziest thing you have ever experienced volunteering with CDISC?
The amount of Chinese “CDISC Speakers” I met in China. CDISC standards have truly become a “global language”, how exciting!
What did you want to be when you grew up?
I have always wanted to work for NASA! I also wanted to be a medical scientist, a physician, someone to help solving problems. I would eventually love to travel with and work for Médecins Sans Frontières.
Please provide a tip that someone would find helpful in working with CDISC Standards
CDISC standards aren’t simply about tabulating data using specific variables and pre-defined structures. Having a deeper understanding of the science behind, and the purpose of, the data is extremely important for meaningful and clinically accurate representation, analysis and reporting of that data within the CDISC standards.