System Challenges in Oncology Care—A Patient Perspective

“You always think you know a little bit of something until you get thrown into the deep end of the pool,” Kellee Franklin, PhD, Chief Innovation Officer at Mindful Innovation Labs, said by way of introduction. “I got thrown into the deep end of the pool with my own health journey when I was diagnosed with triple-negative breast cancer.”

Presenting “Human Factors Engineering for EHR Design in Oncology Care—A Patient Journey Perspective,” to close Session 3 at the 2022 Oncology Clinical Pathways Congress, Franklin introduced herself as a strategic innovation consultant whose eyes were opened to the challenges with the system after her diagnosis in 2013.

“I was more focused on all the system challenges than I was on what I was going through as a patient,” Dr Franklin said. “I vowed if I survived that I would dedicate time and attention to calling your attention to what I believe my field of human-centered design can do to turn the dial with some of the things you’ve been talking about.”

Franklin called attention to Microsoft CEO Sayta Nadella, who changed the way that the company approaches collaboration and innovation.

“He’s shifted the mindset of a company culture that lauded itself on an expert mindset to one that was a growth mindset, and he emphasized empathy and diversity,” Dr Franklin said. “Empathy, putting yourself in the shoes of another person. And diversity, bringing different perspectives together to be able to solve complex problems.”

Franklin said that in her work for entities such as World Vision International, Boeing, and the White House and the Pentagon, she has discovered that there are three keys to innovation: engage, educate, empower.

“These may seem very simplistic, but actually putting the rubber to the road can be more challenging,” Dr Franklin said.

Engagement creates understanding, she said. Engaging diverse people who bring different perspectives allows a unit to look at challenges within systems, she said, and helps us see past the problems and challenges and instead see the opportunities.

“Every single one of us in this room beautifully has a way they view the world that is different from everyone else,” Dr Franklin told the assembly. “Historically, most organizational systems, when working to solve complex problems, assemble teams of like-minded people. And what do you think happens? We end up with the same problems. Engaging people from different perspectives allows us to look at challenges in our organizational systems … and helps us see possibilities.”

Dr Franklin told the story of Doug Dietz of GE Healthcare, who noticed that kids and some adults were afraid of MRI machines, and as a result, were missing their scheduled appointments. Dietz took a course in human-centered design at Stanford Design School, then assembled a diverse team at GE Healthcare that included children, Disney, community members, and workmates, and with their input, Dietz developed the Adventure Series scanner.

“Not only did kids make their appointment, they asked proactively if they could go to their appointments,” Dr Franklin said.

As the second key to innovation, education inspires transformation.

Dr Franklin referred to a quote that “a leader is a dealer in faith.” In every organizational system, she explained, when we’re asking employees or patients to make decisions, it’s really asking them to go from the place of a known to an unknown. To do that, engage people’s heads and their hearts or their feet won’t walk, she said. The engagement piece is the heart, and the head is the education piece.

Dr Franklin mentioned Olivia Newton-John, whose cancer diagnoses and her belief in alternative therapies inspired her to set up the Olivia Newton-John Cancer Wellness & Research Centre.

“Out of all the entertainment accolades that Olivia Newton-John received, she said one of her greatest accomplishments was her cancer research and wellness center,” Dr Franklin said. “So it’s pretty amazing when you can invite the patient and understand the possibilities that are there that we might not be attuned to.”

The final key to innovation is empowerment, which Dr Franklin believes accelerates innovation. And clinical pathways are proving to be a tool that is closing in on these three keys.

“How do we create tools and resources that allow patients to feel empowered by the choices they make?” Dr Franklin asked. “I think clinical pathways is a great resource that is on the brink of creating this tool that gives them the engagement piece and the education piece and is getting them close to that empowerment piece, where they’re at the center of the decision-making.”

In closing, Dr Franklin shared the story of Anil Sethi, a former director at Apple Health who lost his sister to breast cancer. Having seen his sister go through the struggles of trying to get pertinent data, seeing various specialists, and filling out endless forms, he used his knowledge to set up Ciitizen, a technology platform that puts the key to the data car in the hands of the patient, so that the patient has the information necessary to seek out specialists and have the data in their hands, supporting his belief that data is the key to what is going to solve cancer.

Closing her presentation and the first day of the OCPC presentations with a quote from John Quincy Adams about leadership and inspiring others with your actions, Dr Franklin offered the following:

“Every single one of us, from our unique perspective and our unique talents, have a beautiful  opportunity to make a difference,” she said. “I would argue that it’s our calling to make this difference, because if not us, who’s going to do it?”