Guests of “Healthcare Café Meets Cancer Notes: Patients and Pharmaceutical Companies Creating a New World Together.”
March 24, 2023
Patient Centricity
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Part one: Event introduction and the first session (a series of talks led by Mr. Toru Kishida from Cancer Notes)
Following the release of the Patient Engagement Guidebook from Research Phase in Drug Discovery (“The Guidebook”), which was developed jointly by Daiichi Sankyo Co., Ltd. (Daiichi Sankyo) and Takeda Pharmaceutical Company for use in Japan, we started a series of events called the “Healthcare Café” in collaboration with other pharmaceutical companies. The “café” event is a place where we have a dialogue with patients and seek to put the principles of patient engagement (PE) set out in The Guidebook into practice. The first event, held in September 2022, was on the theme of hearing loss and organized by Takeda Pharmaceutical’s Patient Centricity Expansion Team (PCET), which leads that company’s PE activities and advocacy.
This was followed in December by the second event entitled, “Healthcare Café Meets Cancer Notes: Patients and Pharmaceutical Companies Creating a New World Together.” This time, Daiichi Sankyo’s Compassion for Patients (COMPASS) team played a central role in the planning.
Let’s see what the participants of the second event thought of and learned from the real-life stories of people who have experienced living with cancer.
About 600 participated online in the fisrt session of the event
“Can you imagine people living with a disease but enjoying their life to the fullest?”
The Healthcare Café was opened with this question, posed by Mr. Fumihiko Okada from COMPASS, who moderated the day’s events. With most of the participants answering, “I’ve thought about it before but can’t imagine it,” the talks in the first part of the event gave them an opportunity to hear from three cancer survivors about their battles with their diseases and what motivated them to talk about their experiences as patients.
In this Healthcare Café event, an innovative technique called graphic facilitation* was used to give the thoughts and feelings of the cancer survivors an extra dimension.
The first part of the event consisted of talks led by Mr. Toru Kishida from Cancer Notes, who is a cancer survivor himself. He was only in the second year of working after graduating from university when he was diagnosed with embryonal carcinoma, a rare form of cancer, which was treated but returned after a few years. As a young cancer patient, he found very little information about how other cancer sufferers in his age group dealt with the disease, and it was this experience that inspired him to start his YouTube channel, “Cancer Notes,” where he posts videos of interviews with other cancer patients. At this event, he was joined by two of the interviewees who previously appeared on his channel and got them talking on a wide range of topics.
Ms. Mitsuhashi talking her struggle with cancer while raising young children
Doing what I want to do and also enjoying what I can only do right now
The first speaker was Ms. Mika Mitsuhashi, who is still undergoing treatment for breast cancer while bringing up two high school-age children. She talked about how she hesitated to see a doctor after noticing a lump in her breast; the trials and tribulations of going to the doctor with a two-year-old toddler in tow; and the heartbreak of being unable to walk her young child to school during chemotherapy. Her story brought home to those listening the particular care and attention needed to support patients undergoing cancer treatment while caring for young children.
Another major issue for cancer patients with children is how to talk to them about the disease. Ms. Mitsuhashi waited for a few years after she developed the disease before telling her children about her breast cancer, only to find out that they already knew. Looking back, she says, "I feel that perhaps it would have been easier for them if I had told them straightaway – that’s something I regret."
Ms. Mitsuhashi appreciates the way her doctor sets out the treatment plan clearly, which she says instills trust. They can also chat casually about topics that are not directly related to the disease, which enables her to be her natural self and be honest with her emotions. With the support of her trusted doctor, she now allows herself time to enjoy her hobbies, including kickboxing. Asked by Mr. Kishida what living true to herself meant, she replied, "My children don’t take as much looking after anymore, so I would like to enjoy things I want to do. But then again, there are things I can only do because of them, like volunteering as a PTA officer, so I also want to spend each day enjoying the sort of things I can only do now."
Mr. Sakai was diagnosed with a rare cancer in the prime of his life
Living each day to the fullest while living with cancer
The second speaker was Mr. Hiroshi Sakai, an editorial writer at a major newspaper specializing in politics and social security reform, who has small intestine cancer. He was in his mid-40s and working as a sub-editor at a regional branch when he started experiencing extreme breathlessness. His doctor was unable to find the cause. Moreover, working as part of a small team in a hard-to-replace role meant Mr. Sakai needed to continue working. One day, he collapsed with a severe abdominal pain and was hospitalized. While he was being treated for the pain, it was discovered that he was suffering from small intestine cancer.
Having a rare form of cancer meant there was very little information available. Nevertheless, and as a journalist, he wanted to play a role in disseminating information, so he decided to undergo treatment at the National Cancer Center Hospital. However, he found the side effects of chemotherapy excruciating and had to give up the treatment after four months. He was starting to feel numbness in his feet. Fearing that continuing the treatment would make it worse and further reduce his quality of life, he stopped taking the tablets that were prescribed to him. Mr. Sakai talked candidly about side effects and other problems he faced with the medication. "With oral chemotherapy on top of the medication I had been taking for my existing condition, reflux esophagitis, I had to take ten tablets each morning and another ten each evening. I just wanted to be freed from a life like that. I also hated taking the tablets when having dinner with other people, and them fussing over me and asking me if I was okay."
For someone at the prime of his working life like Mr. Sakai, the balancing act between treatment and career is another major challenge. In Mr. Sakai’s case, when he told his chief that he wished to receive treatment at the National Cancer Center Hospital in Tokyo, an arrangement was made so that he could return to the headquarters located in Tokyo as a frontline political reporter. "I was fortunate that I had such a good boss," says Mr. Sakai, who is still full of gratitude.
Mr. Sakai concluded his talk with this reflection: "I’m living with cancer. It’s not possible for me to think about a long-term future, so I just have to live each day to the fullest. Some people say that the day you are told you have cancer is your second birthday. The only wish I have is to live as long as possible from this day on."
Participants writing their own comments on graphics
The importance of thinking about the day-to-day life of patients on medication
After the talks by the three speakers, all the participants gathered around the large sheets of paper on which graphic recordings of the talks were created by a graphic facilitator and added their thoughts and impressions of the talks:
- "Discussions on medicines tend to focus on efficacy and safety aspects, but it’s just as important to think about the day-to-day life of the patients taking the medicines."
"I’ve never heard the expression of ‘a second birthday’ before."
"The speakers talked about not showing their mental struggles in front of their family during cancer treatment – I wonder if I would be able to do the same if I was in their position."
The process helped the participants internalize, little by little, an image of a "world where people suffering from illnesses live their lives being true to themselves."
Please visit Part 2 to learn about the second session, “Immersing yourself in a position".
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