In the middle of the peanut farms and soybean fields sits the small town of Williamston, NC, where as a kid, Arlene Chung would collect from her front porch fruits and vegetables, pies and cookies that patients left as a token of gratitude for her father, a solo family physician who’d take care of patients whether or not they could afford it.
She learned early on that, if not for her father, many people in that tiny town between Rocky Mount and the Outer Banks would not have received healthcare.
Fast forward three decades. Arlene Chung is now Dr. Chung, assistant professor of medicine and pediatrics, and she knows that there are even more patients in tiny towns like Williamston and cities like Raleigh who can’t afford health care and those who can don’t always get the care they need. She’s trying to change that with the help of something called clinical informatics – an emerging field and new clinical subspecialty in which doctors and researchers harness technology and data to improve healthcare for individual patients and populations of patients.
For her work, she is this year’s recipient of the James W. Woods Junior Faculty Award, which supports research and scholarship of junior faculty in the UNC School of Medicine.
We sat down with Dr. Chung for a Five Questions feature to learn about how she chose to follow in her father’s footsteps, her non-traditional path to medical school, and the importance of clinical informatics research at UNC.
I actually started at Duke as a biology major because I knew I was interested in medicine but I wasn’t 100 percent sure about it.
When I was young, my mom and dad instilled a love of reading. I read tons of books that kids probably don’t typically read until high school—books like Siddhartha, and I loved reading all of them. At Duke, I took an intro literature class and really loved it. I knew that if I was going into medicine, then I would probably have to take science classes as pre-med requirements anyway, so I wanted to major in something different. I loved the thought process behind critically appraising books, interpreting them, and finding meaning for my life, so I switched from biology to literature my junior year.
As for the Asian /African Languages and Literature minor, this was partly due to curiosity about my Korean background. We always spoke Korean at home, but at Duke, I was exposed to Korean literature. I learned to read classical Korean literature in my mother language, and I got to go back to my roots in a sense through taking these classes.
Medical school was always in the back of my mind, but I wanted to make sure it was my passion. I really wanted to know about public health infrastructure and the policies that shape the delivery of care for patients. Being from a small town where it was hard for people to get care or get access to resources definitely shaped the way I think about healthcare.
I wanted to know about how I could change the system from a policy perspective so I went to graduate school. I thought this might be my career. If I could impact care and help people in that way then that would probably be equally as fulfilling and challenging as being a doctor.
During my first year in the master’s program, I realized that I really missed working with patients. I thought I’d regret it if I didn’t have the chance to provide clinical care. I thought public health was awesome, and I knew it would help me in whatever career I chose. But I wanted to be a primary care physician who helped to close the gap in access to care.
So I decided to go to East Carolina University for medical school, partly because my parents were nearby but also because I was fortunate to receive the Samuel J. Brody Scholarship.
I worked at a health information technology (HIT) consulting firm near Washington D.C. in 2000 during a gap year between my master’s and medical school. Looking back, I have always loved technology and I was always the first kid to get a computer or different gadgets. As a teen, I loved taking things apart and putting them back together.
Through this experience in health information technology consulting, I first realized that we could increase access to healthcare through information technologies.
I also figured if I didn’t get into medical school, then I had a great job. But thankfully I did get in, and I loved every minute of medical school. It was definitely hard work, but I did a lot of community service while at ECU, which helped sustain me through med school. I helped run a student-led free clinic for the homeless. At the time in Pitt County, my med school mentor had developed a safety-net healthcare system, and I spent my summer and second year of medical school helping to create a patient registry and disease management program for their patients.
I used the skills I learned in graduate school and as a HIT consultant to create a simple database registry, which allowed the staff to see who had what condition, who smoked, etc., so we could reach out to those people and invite them to classes that I’d teach as part of an Albert Schweitzer project. I feel like serving the community made it easier to get through medical school, where you have to memorize a lot of stuff and don’t typically get to do interesting stuff until year three or four.
I think on a basic level, clinical informatics is just using information and technology to advance health care in various ways, whether it’s surveillance across big populations to track flu trends in real time using IT tools or using a technology to improve health outcomes for a patient.
For me, clinical informatics is also a tool for clinical care and research to collect data in better ways to help patients. My research involves using wearable devices and sensors and patient-reported outcomes collected through patient portals to track symptoms and patient progress. This sort of thing is just starting to come to the forefront. Devices are a lot cheaper now. A physical activity tracker once cost hundreds of dollars, was really big, and was a pain to wear. But now they’re small little things like a Fitbit [pedometer]. You can buy these now for about $60 so they are becoming more affordable, and these are the types of devices I use in my own research.
What’s cool about informatics is that we’re at a place where we can use technology to deliver care.
Maybe a patient is undergoing chemotherapy, and if a doctor can use a Fitbit device to see a decline in the number of steps the patient is taking, then that could be an indicator about how the person is doing. In a clinic setting, the patient might not tell me that he or she is getting tired or about some other symptoms; they might consider this complaining. But we need to know this sort of information. This is just one example, but since I can’t be with a patient once they step outside of my clinic, clinical informatics tools have the power and potential to monitor and track how a patient is doing outside of the four walls of the clinic or hospital.
Another example of informatics at work has to do with tools within the electronic health record (EHR). We can nudge a provider to order the right test based on a patient’s age, history, etc. For example, maybe a patient hasn’t had a mammogram; we can remind providers through the EHR to order one. We can use these EHR technologies to help providers make the best decisions for patients based on data we already have.
I think we’re moving closer to better patient-centered care but we’re not there yet. I hope that some of these mobile and patient portal technologies will allow for the patient’s voice and experience to be better incorporated into clinical care. The focus should not just be on what’s medically important but what’s also important based on the patient’s preferences and perspective. We don’t always do the best job with doing that right now in health care, but that’s what makes me excited about informatics – the potential for better patient-centered care through the use of novel technologies.
In one of my research projects, we will be collecting patient-generated health data from outside the clinical encounter to follow patients over time to see what symptoms and health experiences they have at home and in that patient’s real-world settings.
If I could be a fly on the wall in a patient’s life, maybe I could see little things that impact their health that they might not think to tell me about. We don’t currently have a great way to do this other than asking the patient at clinic visits how they are doing, but our research aims to use sensors and devices and patient-reported outcome measures between visits. The clinic visit is golden; doctors want to maximize that small amount of time with the patient, and sometimes we don’t have the data we need to optimally help our patients. That’s why the data generated outside of the clinic visit by patients has great promise to improve symptom management and disease management.
We can also use these technologies to incentivize healthy lifestyles, and some of my prior research shows that patients are willing and able to wear these devices and interact with peers via social media to get social support for behavioral changes like increasing physical activity. We’ve learned that simple competitions can incentivize positive changes for both individuals and groups as well.
Another clinical informatics project I’ve been working on is with Dr. Michael Kappelman from pediatric GI. We’re building a PCORI Patient-Powered Research Network for inflammatory bowel disease patients. What’s exciting is that this patient portal technology will allow patients to set the research agenda for IBD and let them pose questions and vote on which research questions are the most important to them. In this project, one component will be to collect data from sensors, apps, and devices, and to track the data, and link them to symptoms that patients report.
In our research network, patients control what data they share and with whom. In this way, patients can contribute data to the greater whole and we can gain a lot of insight into things that we would never have been able to before. For instance, maybe exercise is better for certain patients who are on a particular kind of treatment, or we could learn that a particular dietary change is better for patients with specific symptoms. We could correlate data about symptoms and therapies, and we don’t really have these types of patient-generated data right now. To do a clinical trial to collect similar data would take many years, and so our patient-powered research network is a way to accelerate research that matters to patients. Patients deserve to be able to contribute and partner with researchers and to get answers faster.
These are very exciting projects, but there are several others at UNC. It’s a very exciting time to be involved in clinical informatics.
Media contact: Mark Derewicz, 919-923-0959, firstname.lastname@example.org