Imagine you’re in a meeting, about to present a project update when you’re suddenly struck with the need to go to the bathroom. This is exactly what BeseyTeo “experienced” via a text she received on her smartphone on a Thursday afternoon as part of Day 2 of the #InTheirShoes simulation. She, along with 20 others, were part of a real-life simulation at Takeda’s Singapore office to better understand the implications of inflammatory bowel disease (IBD), what patients experience on daily basis and how to better target treatments.
For more than five million people worldwide, the simulated inconvenience Besey experienced isn’t a simulation; it’s the day-to-day reality of the typical patient with IBD. Many people with IBD live with chronic fatigue, nausea, vomiting, and worst of all, excruciating, and paralyzing and unpredictable stomach pain on a daily basis. Living with IBD impacts physical and emotional wellbeing, and as a result affects social interactions, family life and work or studies.
“We always hear about putting patients at the center,” said Teo. “It was a great way for Takeda colleagues to truly understand what patients go through, what our daily work contributes to and most importantly, to take pride in the work we’ve done at Takeda.”
The two-day #InTheirShoes program created by the Corporate Communications department at Takeda Zurich and was meant to be a “different way” of doing disease awareness for employees. Audrey Liechti, project lead, and the team wanted to make the experience as real for colleagues as possible. The pilot program was launched in December 2015 in Takeda’s Zurich office with 22 participants.
“While employees know about the benefits of our products, it’s not always easy to understand how a disease like IBD affects the lives and daily activities of patients,” Liechti explains.
Using a mobile phone-based system, members of the experience delivery team sent SMS text messages to participants’ phones leading them through the typical experiences of an IBD patient. While this simulation could never replicate the pain associated with IBD, typically these texts would include reminders of when the patient might feel pain or their experiences with urges, dietary restrictions or other time-relevant situations. As in a real patient’s life, prompt responses to these messages were crucial in this simulation. Failure to do so could lead to an uncomfortable “incident” within the simulation, in order to better demonstrate the experience of IBD sufferers.
“The most challenging part of the experience was handling the business interruptions. I constantly felt embarrassed about leaving a meeting or discussion in a very hectic way,” said one participant in Zurich. “I could never really plan ahead, not even for the next hour, because I was living in this constant uncertainty.”
For longer simulation challenges, “patients” received detailed emails. Mock updates from treating physicians, managers or other colleagues were communicated through phone calls, and the experience team recreated face-to-face visits with specialists. The point of this exercise was to attempt to convey the difficulties of living with and managing IBD, as well as its impact on patients’ professional and personal lives.
Throughout the initiative, participants kept a log of their experience and how it made them feel.
“Although the restrictions are only simulated, they were crafted with the help of patients and the Swiss patient advocacy group for inflammatory bowel diseases and come quite close to what an IBD patient would experience,” says Liechti.
The results of the simulation yielded valuable insight: more than 1,000 interactions with participants, 172 bathroom visits, six incidents of patients “soiling” themselves, and four face-to-face visits with specialists.
One participant reported having to continually interrupt his racquetball game to “use the restroom”, while another recounted a conversation with his daughter where he explained why his diet had suddenly changed. All of this in addition to their normal daily routines, which highlights the truest finding of all: IBD doesn’t work around a patient’s schedule.
After the successful initial pilot in Zurich, the program was offered a second time and is now being adopted and implemented in other Takeda offices. Nearly 300 employees across Takeda in Singapore, Canada, France and Denmark have participated in the initiative. Natacha Raphael, head of communications for Takeda Canada, led their version of the initiative, describing the experience as “humbling and difficult” for the participants.
“This experience really gave me a different sense of how disruptive the disease can be, and how strong you must be to still live a normal life,” said Edward Feijoo from Takeda Canada. “I nearly missed my daughter’s big goal in her soccer game because I was too concerned with finding a bathroom. I had to run to find a bathroom. I made it right on time. I felt that it wasn’t just a victory for my daughter, but a victory that I won over the disease.”
Liechti is excited to see others embracing this immersive program because, though you’ll never truly understand how it feels to live with IBD day in and day out, at least she and her colleagues have a better sense of the impact. “Ultimately, when we understand the patient’s condition, it makes our work more meaningful…and if we’re able to find solutions to challenges, then that’s even better.”
The team hopes to continue to expand the program with the next countries to include Japan, Belgium and Italy, in order to give a broader group of employees the chance to experience the true effects of IBD.
There are also plans for the program to be launched externally to raise awareness for this humbling disease across broader audiences.
1. Fumery, M et al. Epidemiology, risk factors and factors associated with disabling course in inflammatory bowel disease. Rev Prat. 2014 Nov;64(9):1210-5.
2. Living with Crohn’s and Colitis. Crohn’s & Colitis Foundation of America Web site. http://www.ccfa.org/living-with-crohns-colitis. Accessed May 6, 2016.