By Natalie Chang
What Science Gains When We Let Patients Lead
When Julia Wattacheril, MD, took an immersion course in trauma-informed interviewing and counseling, she noticed something. She was the only physician there.
“It was mostly social workers in the group,” she says. “And I wish we were better-trained in some of the ways that social workers are trained. It would help us view things from more of the complex systems that contribute to the human in front of us, rather than ordering the right test.”
Dr. Wattacheril, Director of the Nonalcoholic Fatty Liver Disease Program at Columbia’s Center for Liver Disease and Transplantation, took the course because she knew she was “missing something” about the patients that she was seeing. “Most doctors only realize this when we’re the patient in some capacity: how poorly attuned we are to the practical reality of being a patient. The questions that we ask of our patients are oftentimes like prosecutors. We don't want them to talk too much because we are limited on time, so we ask very directive questions.”
Unfortunately, she’s describing experiences that everyone has likely had with health care providers: being rushed in and out of visits, doctors more interested in their computer screens than eye contact, interviews that feel like interrogations that result in tests and diagnoses that aren’t explained thoroughly.
But what Dr. Wattacheril learned as she practiced is that failing to let patients lead is more than just frustrating or disappointing for them. It is also harmful, eroding the already precarious level of faith that many people have in the health care system. “I just don’t assume that any patient trusts us anymore because of where we are in health care.”
When she began changing the way she interviewed and interacted with her patients, by doing things like taking that trauma-informed interviewing course and taking the time to understand her patient populations, she was able to change the way her patients related to her. And not only did that better equip her to serve them, it has changed the way she approaches the scientific questions that she asks.
Her specialty, nonalcoholic fatty liver disease (NAFLD), is the most common chronic liver disease in the U.S., affecting about a quarter of the population. People with NAFLD drink little to no alcohol but experience the accumulation of extra fat in the liver. NAFLD can also progress to nonalcoholic steatohepatitis, a more aggressive condition that leads to liver scarring (cirrhosis) and, left untreated, liver failure.
NAFLD has traditionally been highly associated with obesity. But what Dr. Wattacheril and other researchers and practitioners have found is that there are anomalous cases in which very lean people develop the condition too.
While they may be rare, they raise important questions about treating people with NAFLD. A standard approach for a doctor might be to simply tell the patient to lose weight, eat healthier, and exercise more. But the growing body of research suggests that NAFLD cannot always be attributed to lifestyle, or to someone’s weight.
This research is important because of the stigma that our culture attaches to obesity. “One of the things that we've historically done in medicine really poorly is around weight loss,” Dr. Wattacheril says. “It's like the last group in society that it's still okay to shame.”
So when doctors treating NAFLD work with patients who are obese, it’s often inappropriate and a form of shaming to just direct them to lose weight. As Dr. Wattacheril points out, obesity is highly associated with adverse childhood events and childhood trauma. Understanding that trauma, as well as current structural and economic difficulties that would make lifestyle changes difficult or impossible, is a necessary part of treating those patients.
Another reason to subvert the traditional NAFLD-obesity connection is that the disease expresses itself differently among different demographics. “A lot of what we knew about fatty liver disease was derived from the European ancestry population,” Dr. Wattacheril says, referring to the alarming racial heterogeneity of most clinical research. But South Asians, for example, have been found to develop chronic diseases without being obese. “When we see those types of distribution differences, that’s what hints for us that there may be genetics in play.”
It is still a growing area of research, but one that will be of increasing importance in the future. The U.S. is projected to see an increase in NAFLD of 21 percent by 2030. One of the most effective ways to drive NAFLD-related research forward is by increasing the number of people who have the disease participating in studies and research.
If every doctor who saw a patient with NAFLD accepted that those patients just needed to change their lifestyle, we wouldn’t ask more deep, scientific questions about the disease. But doctors like Dr. Wattacheril knew that the questions needed to change, and the studies needed to expand.
Dr. Wattacheril, who describes herself as a “clinician investigator,” helps connect patients and research. As both a practitioner and a researcher, she is a valuable advocate for her patients. “I'd say 30 percent of my patients come to me because they have access to their record. They Googled hepatic steatosis, which is the term for fatty liver that they saw on the radiology report, and they're like, ‘My doctor is not talking to me about this. I'm going to go see an expert,’” she says. “They're the ones advancing their own care to the point of, ‘I want to be in this clinical trial.’”
And when patients might not immediately be asking to be enrolled in a clinical study or trial, trust between the patient and doctor becomes crucial. By centering the patient’s experience and desires, Dr. Wattacheril finds that the trust that builds creates space for the patient to open up to the practitioner, provide the information that allows someone to assess the unique factors playing into their disease, and collaborate on deciding whether to join studies and trials. “There's a series of questions that can be asked based on a patient leading you to that point and trusting you to that point,” she says.
Participating in those studies, she points out, can also teach patients invaluable things about themselves. One of her patients was adopted, and therefore did not know much about his biological or genetic history. But when he enrolled to participate in a clinical trial, he was spurred to start asking questions about his genes, particularly because he was concerned about possibly passing NAFLD to his daughters. “It took him two or three years to get his records, find out where his parents were, find out he had siblings, and he started his own journey of interviewing people,” she recalls. “And now he has a much fuller understanding of his family, of himself, of his role in society, of his politics, of religion, of so many, many things.”
Making advances in her scientific research, she says, has a lot to do with the savvy, generosity, and insight from the patients that she serves. “My questions are fed by what bothers my patients,” she says. “What frustrates them is what frustrates me.”
It may feel like an obvious statement to say that doctors should listen to and center their patients. But so many things, from a profit-oriented model, to doctor burnout and overworking, to a lack of trust in institutions, have combined to make that a rare occurrence. “The system has a lot to change,” Dr. Wattacheril notes.
And there is so much to gain from doing so, as she has personally experienced. She describes her journey as a clinician investigator as one that constantly moves towards empathy and solidarity. That approach has led her to innovative and urgent paths of scientific research, but it has also resulted in caring and respectful interpersonal relationships. “It's such a privilege to be able to take care of them because it's an honor to get to know them as people and to be a part of their lives and their family's lives.”