Empathy and Drug Development – Listening to Sheila Babnis

Editor’s Note:  This is the first in a series of pieces that examine pathfinders who are forging new innovative ways of working in Healthcare.

Healthcare, more than any other single field, seems to be undergoing massive reinvention, underscored by pressing unmet needs. One of the most unusual talks I heard in 2014 was a discussion on empathy and patient centricity as strategy by a leader in Big Pharma, Sheila Babnis, at the Front End of Innovation Conference. As head of strategic innovation for product development at Roche, she opened a window into the way the company is innovating how drugs get developed, focusing on the area of clinical trials. That strategy starts with one word, and a word not always associated with the Healthcare industry: empathy. But for Sheila and her team at Roche, it seems to be core.

Sheila started by challenging all of us to imagine a wholly different world…

• A world where healthcare is personalized and precise
• Where we know so much more about the body and disease
• Where we harness the abundance of data to understand the best way to treat people as individuals
• Where drugs are delivered as part of a package of solutions to help patients care for themselves and live fuller lives
• And where patients have a say and a voice in the development and access to their solutions anywhere, anytime

Imagine health and healthcare integrated into our lives. “Healthcare integrated into our lives.”

That whole riff spoke to me, as it clearly did to many in the audience — and while it is easy to say “patient-centered perspective” it is another thing entirely to hear it authentically delivered from a Big Pharma perspective.

Roche knew they needed to revamp how they do their work , particularly in Product Development. Sheila shared how they began by working with patients, and not just by having them talk to the company once a drug had been approved. For years, Roche had brought in patients to speak with the company on the impact the approved drugs were making on their lives. To hear firsthand from patients was always inspiring. But what if Roche brought in patients to speak with global development teams much earlier in the drug development process—when clinical trials were being designed? What if patients were able to share what living with a disease was like? What if a patient could share insights on what was important in participating in a clinical trial? What would make them participate and what would keep them engaged over the long haul? And what if development teams were able to test assumptions directly with patients? This is where Roche has taken a different path.

Talking to patients BEFORE a drug has been tested in clinical trials and getting them to participate in the design of clinical trials is not an every day occurrence.

Sheila brought that perspective and work to life through a story about one patient, named Sean.,. Sean has a chronic illness—Crohn’s —disease. He’s had Crohn’s disease since his early teenage years. Sheila told us “If you were Sean five years ago, you were not as empowered as we are today to take charge of your health. You had to deal with lots of doctors, and it was tough to reduce or eliminate your symptoms so that you could function as a normally healthy person. Your best options were surgery, diet, or joining a clinical trial that might or might not be close to your home.”

To combat the lack of information and to help manage his disease, Sean took matters into his own hands. He started to connect with other Crohn’s patients. To do this, he started up his own website called Crohnology.

Sheila and her team met Sean two years ago when they were embarking on a journey of redesigning how they conduct clinical trials, interface and connect with patients, and improve the value of their medicines. Today, Sean’s site is helping many other patients living with Crohn’s. Sean is also helping Roche in many ways to revolutionize drug development.

He started by joining one of Roche’s Innovation Advisory Boards, which consists of patients, physicians, drug developers, payers and leaders from other industries who have experience making large scale shifts in their business with the customer in mind. Sean was the critical voice of the patient that was needed. Pharma can talk about what they think may be important to patients, but why not ask them firsthand? And that’s what Roche did. They found out directly from patients like Sean what’s important and what they want in treatment options. This is where Roche’s approach is different by engaging patients in Advisory Boards and sessions with study teams.

Through patient involvement in Roche’s clinical trial development the company has been able to factor in the burden to the patient and get more creative in approaching data collection practices among other things. Understanding the health and lifestyle needs, allows Roche to create clinical trials that patients want to be a part of and increases adherence rates.

Said Babnis…“His advice and guidance has been invaluable to us, ensuring we are designing patient solutions with the patient front and center in our design process.”

Sean is also active in working with Roche Study Teams who design and develop solutions for Crohn’s patients. By participating in the design of clinical trials for Crohn’s patients, Sean was able to share that patients don’t want to travel more than 30 minutes from their homes or wait in a doctor’s office for more than 30 minutes. A change such as having a nurse visit Sean instead of Sean visiting a clinic would make his life and other patients’ lives easier. For Roche a change like this ensures patients continue to receive their treatment and continue to participate in a clinical trial.

“Hearing what is important to Sean and other patients has motivated Roche to continue to pursue new ways of working and thinking. These patients have helped us realize that people need and want drugs that are beyond safe and compliant. Just like Sean, and just like you and me, what they want is quality of life. To not have to worry about being close to home all the time, to be able to eat normal food, hang out with their friends. They want freedom.”

Sheila also shared a comment from a clinical scientist about talking with patients earlier in the process:

“I think building in time to test assumptions and gain feedback from patients early on will change the way we design our protocols going forward. For example, what may seem to look good on paper, may not work in real life when tested with patients. It’s better to know that early on.”

She finished by saying “Looking at our mission through our patients’ eyes has given us a whole new dimension and sense of purpose. This goal is what drives our efforts day in and day out.”

If this is what empathy in action in healthcare looks like, please, bring it on.

In my next blog post I’ll share more on Sheila’s presentation and how co-creation is driving changes.

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Julie Anixter is the executive editor and co-founder of Innovation Excellence. She also serves as the Chief Learning Officer for RELEVENTS and Executive in Residence for the Disruptor Foundation. The co-author of three books, she’s working on a fourth on future innovators. She worked with Tom Peters for five years on bringing big ideas to big audiences. Now she works with the US Military, Healthcare, Education, Manufacturing and other high test innovation cultures that make a difference. You can follow her @julieanixter