#InTheirShoes: What it’s like to be an IBD patient – how we’ve approached it

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 Besey Teo “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, was part of a real-life simulation exercise at Takeda’s Singapore office. The activity was to better understand the implications of inflammatory bowel disease (IBD), what patients experience on a daily basis and how to better target treatments.

For more than five million people worldwide, the simulated inconvenience Teo experienced isn’t an exercise; it’s the day-to-day reality of the typical patient with IBD. Many people with IBD live with chronic fatigue, nausea, and worst of all, excruciating, and paralyzing and unpredictable stomach pain on a daily basis. Living with IBD impacts physical and emotional well-being, 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.”

Pilot started in Takeda Zurich Office

The two-day #InTheirShoes program was created by the Corporate Communications department at Takeda Zurich office and was meant to be a “different way” of raising employees' disease awareness. Project leader, Audrey Liechti, and her team wanted to make the experience as real as possible for their colleagues. The pilot program was launched in December 2015 in Takeda’s Zurich office with 22 participants.

“For employees and stakeholders it’s not always easy to fully 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 send SMS text messages to participants’ phones leading them through the typical experiences of an IBD patient. While this simulation could never replicate the pain and real impacts 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 are 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 simulated challenges, “patients” receive detailed emails. Mock updates from treating physicians, managers or other colleagues are communicated through phone calls, and face-to-face visits with specialists recreated by the team. The point of this exercise is to attempt to convey the difficulties of living with and managing IBD, as well as its impact on patients’ professional and personal lives.

 “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.

Program expanded

After the successful pilot in Zurich, the program will be run on four occasions by the end of 2017 and is 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 one will 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 this enables us to find solutions to challenges patients face every day, then that’s even better. That’s what we’re hoping to achieve in the long run, both internally and externally.” 

For broader audiences

Beyond the initially focused internal audience of Takeda, the team has continued to expand the program across broader audiences (HCPs, journalists and institutions) in the Europe and Canada region. In each country where the program has been initiated, patient associations were involved.

Most importantly, the positive buzz around #InTheirShoes has led to its inclusion in product launch program, national conferences, annual meetings and other internal activities across Takeda. The initiative was awarded in the Internal Communications and Employee Engagement category during the PRWeek Awards 2016 and received the “highly commended” accolade. #InTheirShoes also has led to other recent programs. Inspired by the activity and Takeda’s commitment, an employee came forward and spoke about her own experiences with IBD when travelling. This led to the launch of a new initiative called #FlyWithIBD, calling on airlines to provide better experiences by offering IBD-friendly meals on long-haul flights.

References

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.


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