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Having no one to talk to, wanting to change that situation

Takehana  Our company’s motto is “for patients’ better today and tomorrow”. Supporting the activities of “Cancer Parents” (hereinafter referred to as “CP”) matches this motto exactly. Nishiguchi-san, you started “CP” while you were suffering from cancer. Can you please tell me why you took such actions when you were faced with a grueling situation?

Nishiguchi I was diagnosed with my cancer in February 2015. My only daughter was in her last year of kindergarten, and she was scheduled to start elementary school that spring. When I heard I had cancer, my mind went completely blank at first… After a while, I started thinking about a lot of things. “Would I be able to see my daughter getting married?”, “Would I be able to see her coming-of-age ceremony?”, “More than that, would I even be able to make it to her school’s sports festival in the spring?”, things like that…

At that time, I had absolutely no knowledge about cancer. Everything was a mystery for me, and I felt so alone, and I really wanted someone to talk to who would understand me. When I started researching, I found that, of the people who are newly diagnosed with cancer each year, approximately 60,000 patients have children who are younger than 18 years old. In addition, 5-year survival rate of cancer patients is approximately 60%, so the number of patients is actually increasing each year. So, I thought I would find someone to talk to immediately. However, I didn’t find anyone near me, and I never heard about anything. Don’t you think that’s strange?

“I want to create an environment where I can talk to people about cancer more easily! And, wouldn’t it be better if it were an environment where I could talk to people from my generation or people with children the same age as my daughter or people in a similar situation as myself?” That was the compelling reason for establishing “CP”.

The reason why I used the word “Parents” is because I am also a parent with a child. When I was doing my research, I found societies where people could discuss about children with cancer or care for the elderly, but I couldn’t find any society where parents with cancer could talk to each other. The most problematic issue for me after finding out my cancer was “how to communicate with my child”. I, therefore, felt that there was a definite need for such people. For those diagnosed with cancer, being able to communicate with people who have the same questions or anxieties and providing an environment where we can support each other (i.e. peer support), can be a great support for cancer patients… That’s why I decided to offer a service targeting parents with children.

Takehana It is amazing that you took such action even though you were diagnosed with cancer. I feel energy from you, Nishiguchi-san. What goals does CP have?

Nishiguchi That cancer patients become optimistic. Also, to create a society that is easy to live in even if you develop cancer. Based on my experience, interacting with those in a similar situation as yourself allows you to feel a lot better. And it allows you to feel hope about living positively. There is no greater joy if cancer patients can live a long life energetically as a result. By delivering the voice of cancer patients through activities of CP, I know we can change society for the better.

Takehana I see, I understand very well. What are the challenges you currently face?

Nishiguchi The first is to increase the number of members. The group was established so that I could find someone close by to discuss with. If I can increase the number of CP members, I believe new value will be created as well.  There are various potential needs that cancer patients have. Of course, the ultimate need we all have is “I want to live!” (laughs); however, there are also smaller, more diverse needs we all have. If we can find what these needs are, I think there will be a greater value to operating “CP”.

Believing that society will be easier to live in even if you develop cancer through making various voices be heard

Takehana When I first learned of CP, I remember being very surprised by it and thinking “I can’t believe there is someone who is trying to provide this type of service!” In addition, you, Nishiguchi-san, as the founder, were a cancer patient yourself. I really couldn’t believe how powerful and strong you were. And, since I work in a healthcare marketing company, I really wanted to do something with you some day.

When I first heard about CP, there were only 28 members; now you have over 330 members (as of September 2016). It’s increasing at a rapid speed, and I thought this was really it. I believe there are that many people who feel the same way you do, Nishiguchi-san.

Nishiguchi  Thank you very much. I am so happy to hear that! The growth in the number of members is faster than I expected. While, it is fairly easy to acquire information about cancer, I believe it is quite difficult to find information related to daily life. Basically, in order for cancer patients to live a reassured life, it is important for them to have a place where they can share information on daily life with various peers. I also think it is important to create a system where patients themselves increase their communication rather than just share information so that they can realize needs in their lives and where everyone will think about and act to resolve that particular need.

Takehana We also have opportunities to ask cancer patients about their needs. In most cases, when we ask, “Is there anything that troubles you?”, patients say “there’s nothing in particular.” But if we say, “It seems like other patients are having trouble with this,” then patients say, “that is true; that is troubling me as well.” This suggests that the patients themselves are unaware of their own needs. There are definitely hidden needs that become apparent only when they are talking with others or are looking at other cases.

Nishiguchi You’re right. Everyone makes amends to their life so that they aren’t troubled in daily life. Therefore, it is difficult for them to realize such needs. However, by resolving issues that are hidden, we can improve lifestyle by a little bit. And, in order to resolve such needs and act on it, you cannot be the only one raising your voice about it. You need hundreds or thousands of voices until the world will hear you. That is why we need many people to join us as members and gather various opinions by creating opportunities where members can actively communicate.

Takehana I agree. That is one of the greatest strengths of CP! Since we are a healthcare marketing company, our job is to analyze such patients’ voices and deliver their opinions to healthcare-related personnel including pharmaceutical companies. Interviews with patients require skilled moderators and analysts to fully explore patients’ insights and gather as much useful information as possible. However, it is difficult for us to divulge into the details within the limited time we are provided. And there is an even greater barrier if we try to interview a lot of patients.

CP already has a large number of members and asking each member their opinion can allow us to propose various “forms” through our analysis that can be helpful.

Nishiguchi We are still exploring at CP, but I have received positive feedback since releasing the service about six months ago. I sincerely feel that there are various needs we all face. If we can pick up various voices from patient networks, we can use it to create a better society and to help cancer patients themselves. I am grateful that Medilead has agreed to help us gather opinions, analyze the information and provide us with proposals!

Takehana I am deeply touched by your optimistic stance, Nishiguchi-san. We are fully committed to fulfill everyone’s expectations.