‘Sick day’ on the clock: CT Biopharma firm expands patient simulations to spark creativity, empathy

CT Insider – Saturday, November 2, 2024
By Liese Klein

It was the call from my manager that really hit home — a superficially sympathetic voice hinting that my newly diagnosed case of chronic kidney disease would likely cost me my job.

Luckily, my “manager” was played by a British-accented actor and my new ailment was also fictional, all part of a program designed to help biotech workers better understand the patients who depend on their products.

Hearing that the time-consuming dialysis treatment I would need to stay alive with my fictional ailment would likely put me out of a job offered a glimpse into the challenges chronic disease patients face.

Nearly 60 employees at Ridgefield biopharma firm Boehringer Ingelheim have taken part in the same program known as “A Life in a Day,” and say it has changed how they do their jobs.

“It was very emotional, more emotional and overwhelming than I anticipated,” said Tameka Sanders, a Boehringer Ingelheim employee who works in patient advocacy. She participated in the same simulation of chronic kidney disease last year and recently did a second round simulating the life of a patient with obesity.

“Even though this was a simulation, it just became very real and allowed me to realize some of the decisions and the challenges that people with kidney disease have to face,” Saunders said. She has used the experience in her work to better design programs and supports for kidney patients.

Germany-based drugmaker Boehringer Ingelheim, which employs about 1,900 people at its U.S. headquarters in Ridgefield, first introduced patient simulations at its U.K. operations in 2021. Among the company’s products are a range of asthma inhalers, for which the company agreed to cap patients’ out-of-pocket costs earlier this year after pressure from lawmakers.

Since launching the patient simulation program, dozens of Boehringer Ingelheim employees around the world — from lab workers to top executives — have spent hours experiencing daily challenges as patients through the program.

Developed in England as an “immersive simulation,” it starts first thing in the morning with a series of app surveys, calls and challenges meant to replicate a disease-sufferer’s experience — everything from concerned calls from the boss to diet restrictions to simulations of actual medical procedures.

Details of the program are kept secret to preserve its impact, but fully participating involves wearing things, consuming ersatz “medication” and sticking things, such as medical ports and tubing, onto your skin. The company started six years ago with two therapy areas and now offers 29 experiences, ranging from atrial fibrillation to multiple sclerosis to atopic dermatitis.

Most of the program participants work at biopharma companies, said Cora Graham, client relationship manager at the London-based company.

“It’s about having the patient at the heart of everything that a pharmaceutical company will do,” Graham said. “It’s really ensuring that everything that they do links back to the patient.”

For Boehringer Ingelheim employees in Connecticut, A Life in a Day augments other in-house training to give workers a more direct connection to patients.

“We believe the more patient-centric as a company we can be, the better our patients and their families and their outcomes will be,” said Deborah Reardon, vice president for patient excellence at Boehringer Ingelheim. “I think nobody can truly understand a patient living with a chronic or rare disease unless you’ve truly lived it.”

Pretend patients train new doctors

One flavor of simulation, in which trainee doctors and other healthcare workers work with actors pretending to be patients, has been an important part of medical training for more than 20 years, said Dr. Marc Auerbach, director of pediatric simulation at the Yale Center for Healthcare Simulation. Fictional scenarios help students learn on a deeper level, especially when they discuss the experiences, he said.

“I would say the goal of this work is that those transformational experiences where individuals are having the opportunity … to reflect on that and have a discussion, and sort of force their brain to start to process a little bit more deeply,” Auerbach said.

Technology like virtual and augmented reality at Yale’s center help medical students feel what it’s like to experience dizziness or be transported on a gurney within a hospital, Auerbach said. Newer innovations include adding sounds and smells in simulations to make things more realistic.

Simulation has been studied and proven effective in training medical workers to perform complex tasks like spinal taps and to better assist in births, Auerbach said. In the past, medical students took turns being “patients” for simulations, but that role is now mostly performed by professional actors.

Apprentice doctors do get to play the roles of patients and family members at special training events across the state, Auerbach said, and they report profound experiences. “They say, ‘Wow, this is very different than any experience that I just never thought about, how parents would go through this experience or a patient would go through this experience,’” he said.

Programs like A Life in Day represent a new frontier for simulations outside of hospitals but have the same core principles, Auerbach said.

“I think it’s a great concept,” Auerbach said. “The use of virtual or augmented reality — which we’re starting to use a bit more within our sim center —‒ might make that even more feasible.”

Patients take bigger roles at pharma firms

Beyond simulations, patients are more involved than ever in drug discovery at companies like Alexion in New Haven, the rare disease division of global pharma giant AstraZeneca.

Patients with rare diseases like myasthenia gravis and metastatic non-small cell lung cancer are included at the earliest stage of the research process, even before clinical trials, according to Alexion spokesperson Michaela Menard. Patients also give researchers feedback on the challenges of living with rare diseases and help inspire innovation.

“Given small populations and the need for real world evidence for rare diseases, direct engagement with the patient community is essential for innovation,” Menard said. “We bring patients, physicians and caregivers together to broaden our understanding of the patient experience and the impact of the disease on daily life.”

For Sanders of Boehringer Ingelheim, A Life in Day helped her understand patient struggles on a deeper level. As part of the obesity experience, she almost missed her daughter’s school drop-off because of how long it took her to do daily tasks while simulating life in a much larger body.

“One of the biggest shockers to me — and it’s not that I haven’t heard this from patients over and over — but it was how tired I got and how long it took me to do certain things. That was a point of frustration for me,” Saunders said.

Saunders said she was also deeply impacted by the comments directed at her as part of the program, scripted to highlight common biases against people with obesity. After A Life in a Day, she sat down with her kids to educate them about how comments about body size can cause pain.

“Being in this actual experience, again, it allowed me to empathize with (patients) to a greater extent,” Saunders said. “I think that anyone within our organization could benefit from this experience.”

Motivating experience

Looking back on my 24 hours with fictional chronic kidney disease, the reality of living with a steadily worsening condition was both overwhelming and motivating.

Could I summon up the courage to ask a friend or family member to donate a kidney for me? How could I drop everything for dialysis multiple times a week? So many things would have to change — and my understanding of the challenges faced by friends with chronic kidney disease had increased exponentially.

Now I wanted to reach out and find out how I could help.

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