- When Dartmouth Hitchcock Medical Center’s Corey Siegel, MD, wanted to engage in shared decision-making with his ulcerative colitis patients, it was difficult to know where to begin. The treatment process for the condition is complicated, and Siegel needed to better understand patient preferences to be able to engage with them more fully.
For patients with ulcerative colitis, treatment is like being stuck between a rock and a hard place, Siegel explained to PatientEngagementHIT.com. Available medication options often have complicated side effects, and there are also two surgical options. While patients can maintain a high quality of life with these surgeries, the treatments still create a major change in lifestyle and care.
“In recognizing that [treatment is] such a hard decision, we really wanted to develop some tool and some support for shared decision-making process with patients,” said Siegel, who is an associate professor of medicine and the director of the inflammatory bowel disease center at Dartmouth Hitchcock.
Ultimately, these efforts are a part of a general movement toward patient-centered care.
“We really need to understand what patients are most fearful of and most concerned about and what they want to talk about because otherwise it becomes a very provider-centric program as opposed to a patient-centric program,” Siegel explained.
As a part of his efforts to assess patient preferences, Siegel went right to the source using a patient survey.
At the beginning of his study, Siegel hypothesized that patients were most concerned with ulcerative colitis medications, driving them to delay treatment. This delay sometimes causes patients to allow their conditions to deteriorate to the point that surgery is the only viable option.
Siegel and his research team surveyed nearly 500 patients using a technique called Moment to Moment Affect Trace, which helped assess participants’ responses to audio clips voicing potential patient views.
By using this tracking assessment, Siegel was able to view a broad patient cohort’s reaction to certain claims, developing an understanding of what the group as a whole thought about their illness and treatment.
“So what we did here is really somewhat of a needs assessment in preparation in developing a decision aid to help patients make decisions about ulcerative colitis treatment,” Siegel stated. “What we set out to do is understand exactly what patients want to know and how they want to know that information, and what things they’re really concerned about so that when we’re developing this tool to aid them we’re directly addressing these concerns.”
The results showed that patients were most concerned with the complications of their ulcerative colitis as opposed to the treatments themselves, the opposite of Siegel’s hypothesis. Overall, patients showed more concern for the risk of colon cancer, the need for surgery, and other side effects of their illnesses.
“[The results] really made me think that maybe the providers or the doctors have biases that they think the patients are so scared of these drugs, but in fact, they’re more worried about complications of the disease, so therefore we need to use appropriate treatment to treat these diseases,” Siegel said.
After the study, Siegel and colleagues, alongside technology company Emmi, developed a multimedia education tool. Through a short animated presentation, patients learn about their ulcerative colitis, the side effects, the medication options, and a little bit about their surgical options.
“The idea is really to understand what their preferences are and have them make a decision that matches that preference, and that physicians and providers help guide them, too,” Siegel said.
These tools include technology like the one Siegel helped develop, but can also include robust patient engagement strategies.
“To me, anything we can do to engage our patients is going to end up helping their care,” he continued. “Anything we can do to make sure they really understand what the decisions are that they are being asked to be a part of can always be beneficial.”
According to Siegel, that kind of patient activation can take numerous different forms.
“It can happen in a simple conversation in the office, which I think is a great place to start. It’s offering patients to get more information from specialty to societies,” Siegel said. “But really to empower them to ask questions, and to be a part of their medical care not just as passive consumers, but really as a partner with their providers.”
Overall, this research isn’t only about ulcerative colitis. While Siegel’s study does present potentially key implications for patient engagement for that particular condition, it also speaks to patient care at large.
“I think the importance of our work in the context of patient-centric care is that we didn’t just build a communications tool to teach our patients about their disease and treatments based on what doctors thought was important to tell them,” Siegel concluded.
“We went to patients first to understand what they needed to hear and what they wanted to hear and what they’re most fearful of so we can address it.”