Improving health care through information

Written by: 
Ernestine Bousquet

Xuegun "Della" Pan ('12)In many ways, research is as important to healthcare as treatment is.

While the medical community's ultimate priority is to treat sick people, they also need to learn about how a disease runs its course and responds to treatment. Sick people generate important data that can help the medical community fight disease and find cures -- and that's where Xuequn "Della" Pan ('12) comes in.

Pan, who earned her Ph.D. in information science in UNT's nationally recognized health informatics program, is part of a field making healthcare information more transparent and accessible. Health informatics involves helping healthcare professionals create information systems and access better resources as well as teaching consumers how to find and evaluate legitimate, good healthcare information.

Pan is now a postdoctoral fellow in clinical informatics at the Lister Hill National Center for Biomedical Communications, a research division of the National Library of Medicine, which is part of the National Institutes of Health. NIH is part of the U.S. Department of Health and Human Services. The center works with HHS, NIH and academic institutions to gather and analyze biomedical information for research.

Pan specializes in clinical research information systems, working from electronic health records from the NIH Clinical Center, the world's largest research hospital. It's her job to develop and apply advanced informatics approaches to extract reliable and usable phenotypic information -- which are physical or biochemical characteristics -- from clinical data repositories. She also designs next generation electronic health records.

"I help clinicians and researchers understand and achieve meaningful use of health information," Pan says. "I'm part of a field facilitating patient-centric and information-rich healthcare."

She excels because she has the right combination of information science and computer science skills, both of which she honed in the College of Information's health librarianship -- or health informatics -- graduate program. The program is at the forefront of this growing field and U.S. News & World Report ranks it 6th nationally.

Better healthcare information systems

Pan started her career in IT in China where she learned how to create information systems and websites for the healthcare industry. But until she moved to the U.S. for graduate studies and became part of UNT's health informatics program, she didn't put much thought into what the user wanted and needed.

In UNT's program, Pan explored information and communication theories and learned about the behavior of people seeking information.

"This program gave me more than I expected. I got to know a lot about theories and think more about the needs of users during design process," Pan says. "The faculty members have a very practical approach to information science and many are experts in the field."

Programs like the health informatics program are attracting a record number of doctoral students and graduates to UNT. The university enrolled its largest class in Fall 2012 with more than 1,820 doctoral students and UNT awards more than 200 doctoral degrees annually, making it one of the state's top universities for doctoral education.

Pan also is among the many UNT alumni who are rising to the top of their fields, using the hands-on experience, knowledge and sound preparation gained through UNT's programs.

Ana Cleveland, program director and Regents Professor of library and information sciences, says health information professionals are key members of any healthcare team.

"Health information management is critical to our society, whether we look at it from a clinical perspective or from the health consumer's viewpoint. Information is the fuel that drives healthcare decision-making," Cleveland says. "There is a need for a workforce that is well-versed in health information technology systems and has information management skills. Dr. Pan has these attributes and is an excellent example of the graduates of our program."

User-friendly healthcare information

While Pan is now focused on data mining for researchers, she got her start creating user-friendly health information portals for consumers while at UNT.

During her studies, Pan was the coordinator of an outreach award from NLM to train the Chinese population in the Dallas-Fort Worth area how to access health information online. The team, which included Cleveland and other graduate students and faculty, was charged with creating a Web-based, bilingual health information pathfinder, or portal to other resources.

The need was great. Despite being the largest and fastest-growing Asian group in the U.S., the Chinese population is typically underserved in healthcare because of language and cultural barriers. Being Chinese herself, Pan played an important role in helping the team navigate cultural sensitivities and language barriers in building the pathfinder.

They started first with a survey and analysis to determine what health information the DFW Chinese population was looking for online and in what way. It was an essential first step and something that Pan hadn't been trained to do before becoming a part of UNT's health informatics program.

Through that survey, the team discovered that the DFW Chinese population was looking most for diabetes information. The survey also illustrated that the population hadn't been coached properly on looking for legitimate, authoritative information or how to understand Western medical terminology.

A resource portal

The team built the pathfinder, making sure to include authoritative links and up-to-date resources that the Chinese population would recognize. They designed a simple, bilingual site with English and simplified Chinese -- spoken by most Chinese in the U.S. -- for easy side-by-side translations if English-speaking librarians were helping Chinese-only speakers use the site. They even took care to use culturally sensitive colors, images and graphics.

After launching the site, the team held training sessions throughout the Dallas-Fort Worth area to promote the pathfinder and to help people navigate it properly. For many participants, the pathfinder taught them how to better navigate all healthcare information online, not just diabetes information, Pan says.

And now people all over the world have accessed the site.

"I felt really proud that I could do something for this community," Pan says. "I want to be a bridge between health, technology and people. I want to make sure people are getting the best health information so they can understand their health problems and make good medical decisions."