With patients as her inspiration, Dr. Millie Long is on a mission to prevent the progression and complications of IBD

A Triple Threat Reshaping Patient Care

Dr. Millie Long is such an incredibly accomplished researcher, educator, and clinician that it’s easy to wonder how she fits it all in to make such a profound impact on so many different areas of the IBD discipline.

Known and described as a ‘triple threat’ by IBD colleagues, Dr. Long has an inner determination — an unstoppable force — that drives her to excellence.

“I was told early on that I couldn’t do all three missions because no one has the time to be an excellent educator, researcher, and clinician taking great care of patients,” said Dr. Long. “I don’t like it when people tell me I can’t do something. Therefore, at no point did I ever consider anything else.”

If one theme runs throughout Dr. Long’s body of work, it’s prevention — everything from disease prevention to early detection to treatments that prevent complications.

“Prevention has been at the forefront of my relationships with patients,” said Dr. Long, “not only from a research perspective but also from a clinical care perspective.

“I would argue that in a field like IBD, we should have a framework for all forms of prevention. I would love to get to the point where we could actually prevent IBD.”

As a trained methodologist with a background in epidemiology and biostatistics, Dr. Long has the unique ability to translate detailed research and clinical experience into practice guidelines that help others improve patient outcomes. She is also uniquely fellowship-trained in preventive medicine.

For example, because she showed that IBD patients on immunosuppressive medications were at greater risk of developing shingles at earlier ages, it’s now recommended that they receive herpes zoster (aka, shingles) vaccine at age 19 versus age 50 in the general population.

Dr. Long also completed some of the original work to understand the mechanisms behind skin cancer risk associated with IBD therapies — research that resulted from observing skin cancers in her young patients.

“At the time it wasn’t even on the radar that we should be thinking outside of the GI system to look at skin cancer risk,” said Dr. Long. “The work we did along with many others helped us to define that risk and introduce preventive medicine guidelines in IBD.

“The way to best help the population at large is to change guidelines and policies. The scientific evidence has to be disseminated so it can reach people.”

Along those lines, Dr. Long was senior author of the 2019 UC guidelines for the American College of Gastroenterology (ACG) and has been a methodologist on the Crohn’s disease guidelines. She is also co-editor in chief of the American Journal of Gastroenterology — known in the field as the ‘Red Journal’ — which publishes guidelines across different GI areas, including inflammatory bowel disease.

“It’s been a very worthwhile endeavor that marries my methodological background with my work as a clinician,” said Dr. Long. “We publish science that’s important for patients, and changes the field, but it has been done soundly so that you can interpret and believe those findings.”

From early in her career, Dr. Long has been keen on incorporating the patient’s perspective in everything she does, using innovative approaches to achieve that end. During the early days of the internet, she seized its potential to engage more patients in her research as many could not participate in clinical trials because they didn’t have the time or didn’t fit the inclusion criteria.

To help remedy that situation, Dr. Long along with her colleagues Drs. Michael Kappelman and Robert Sandler at the University of North Carolina developed the first-ever internet-based cohort of patients living with IBD: The IBD Partners Patient-Powered Research Network (PPRN).

“We wanted to enable more patient participation, on their own time, on their own terms. Most of all, we wanted to study what matters most to patients. So, why not ask them?”

The PPRN fostered a better understanding of patient outcomes from the patient’s perspective. Patients participated voluntarily, and on their own time would complete surveys and provide data that drove innovation at UNC.

The study ended up enrolling more than 16,000 IBD patients over more than a decade and became an important repository, especially for junior faculty who had questions that they wanted to pose in the patient cohort. Dr. Long estimates that more than 400 different investigators, many of them junior, utilized the cohort and involved patients in their research.

Patients proposed unique ideas that led to collaborative studies. For example, investigators studied exercise and sleep in managing Crohn’s disease and ulcerative colitis. In another example, a randomized control trial of specific diets was conducted in a highly economical and efficient model, at scale, over the internet.

It was her patients who led her to her work on skin cancer and shingles prevention.

“Patients have inspired almost every research idea I’ve ever had,” she said. “That ability to think of a patient as a ‘citizen scientist’ was probably the most important part of the work that’s been done at UNC.”

For Dr. Long, sharing her experiences and knowledge to help shape future clinicians, researchers, and physician scientists has been a lifelong pursuit.

As the fellowship program director for the Division of Gastroenterology and Hepatology at UNC, Dr. Long’s extensive research background has helped her shape a broad-based educational experience that goes far beyond the classroom to one-on-one or small group interactions, experiential learning, and case-based learning while constantly leveraging the latest technologies.

“Even if learners aren’t your former trainees, you can have an impact on how they practice and how they treat individual patients.”

Dr. Long also co-chairs the annual AIBD conference, regional continuing medical education (CME) events, and various education initiatives through the American Gastroenterological Association (AGA), American College of Gastroenterology (ACG), and the Crohn’s and Colitis Foundation (CCF).

Seeing patients whose lives have been transformed, who are healthy, active, and have careers and families they never thought they would have is an inspiration to Dr. Long. Humble, kind, and generous with her time, her demeanor belies the powerhouse of energy, determination, and grit that lies within. The uncanny ability to look holistically across the field and apply what she knows across her research, clinical, and educational endeavors is simply an extension of who she is.

“It’s always been a part of my life. I don’t think I ever thought of doing anything else.”