NPO 5years, one of 2018 FIT For Charity Run beneficiary non-profit organisations, is the largest cancer patient support organisation in Japan. It operates an online community site for cancer patients to provide hope, healing, and real life experiences to cancer patients. We met with Mr. Junichi Okubo, CEO of NPO 5years, to hear about his story.
Pictured from left to right: David Schaefer (FIT Communications Team), Mr. Ishikawa (5years), Mr. Yamamoto (5years Secretary General), Mr. Okubo (5years CEO), Ayano Yoshida and Akiko Sagawa (both FIT Communications Team).
FIT: Please tell us about why you started 5years.
Okubo: I started 5years because I wanted to provide the support that I wish I had when I was diagnosed with cancer. 12 years ago, I had an advanced stage cancer, and was told by the doctor that my five-year survival rate was 20%. However, I miraculously survived, and after leaving the hospital, every time I returned for my bi-yearly check-up, my doctor would ask me to stay and speak with the patients in the ward; but all I was able to do was hold their hands and say words of encouragement. After leaving hospital, I had gone back to work and was completing 100K marathons, something I did before getting ill. I started to wonder, “Is there a reason to why I survived? Is it okay for me to keep living this way?” I wanted to do something meaningful and coinciding with my turning 50 years old, I started 5years.
Before starting 5years, I visited many non-profit organisations. I discovered an American organisation called PatientsLikeMe, which supports ALS patients and their families, and flew to Boston to visit them. This organisation was started by the Heywood brothers as the youngest brother was diagnosed with ALS. They believed in the importance of patients connecting with other patients and sharing their experiences. I believed that we needed a similar system in Japan and I started 5years.
FIT: Please tell us about the kind of work 5years does?
Okubo: Based on my own experience, I strongly believed that people who are diagnosed with cancer need hope. So I started a community site in February 2015 for patients who are currently undergoing treatments, their families, and survivors who have completed their treatments. In four and a half years since the site opened, about 7,400 profiles are registered in the database.
In our society today, it is difficult for people who have been diagnosed with cancer to meet other people who have experienced cancer before them. Therefore, we are developing this site with the intention of creating an infrastructure where patients can meet survivors who have had the same cancer experience. When patients try to collect information online, most of the information is about the illness and treatment and blogs written by those who are currently undergoing treatments. It is difficult to find information about living with the illness and about people who have returned to society after recovering. Using 5years, patients can search for information like looking up a dictionary, ask additional questions if the patients find helpful information, and find information about real life experience of other patients who were diagnosed with the same cancer. These are some of the characteristics of 5years.
FIT: Please tell us about the challenges you faced.
Okubo: When I first started 5years, I would hold information sessions, but the patients will tell me “Okubo-san, we understand what you are trying to do, but we don’t think it will work.” People would like to know about other patients, but would be reluctant to share information about themselves, they said.
I believe that there are three things that cancer patients need: The first is hope for a life after recovering from cancer; the second is feeling that they are not alone; and the third is real life stories of other patients. Out of these three, I believe that real life stories of patients who have recovered bring most hope to cancer patients. In actuality, the patients are fighting the illness alone. However, I want them to feel that they are not isolated as there are many other cancer patients who are fighting as well.
Compared to foreign countries such as the United States, cancer still tends to be considered a taboo in Japan. In fact, one million people are diagnosed with cancer every year, but only a few people make it public. Therefore, it was very difficult to increase the number of users. The number of users gradually increased as I personally met with people at coffee shops, explained about the site using my smart phone, and had them register. As the number of registered users increased, the site gained credibility, and once the media started reporting on us, the number of users increased greatly.
FIT: Please tell us about the service features of the site.
Okubo: When registering, the user can choose to use a nickname or their real name to be displayed on their profile. The more information you post, the more information you are able to see. Many people register and mostly search for information at first but gradually, they start posting information as well. An example of a feature of this site is, when a user patient posts a comment like “I went for an examination today,” and when another user patient who sees the comment “likes” the comment, the feeling of loneliness disappears. On the bulletin board, “Minna-no Hiroba” (Everyone’s Space), communication regarding treatments and illness is not allowed. The bulletin board is only used to exchange information necessary for reintegrating into society or work after cancer treatment.
In order to prevent trouble due to solicitation of religion or fraudulent business, the site does not allow peer to peer messaging. We place emphasis on creating a pleasant atmosphere and community within the site, and focus mostly on site management and daily monitoring. We operate as a small team, with the support of Yamamoto-san and Ishikawa-san.
FIT: Please tell us when you feel the work you do is rewarding?
Okubo: When I come across posts that are thanking the site and our work, during the daily monitoring of the site. I really feel that my hard work has had a positive impact.
FIT: Please tell us about your future plans.
Okubo: I believe there are two points we need to work on. The first is increasing the number of registered users and the second is monetisation of the business. Regarding the first point, I believe it is crucial to continue increasing the number of registered users. There are more than 50 types of cancer, and we believe that information shared by patients with similar age, sex, occupation, will be most helpful. Therefore, in order to subdivide the information shared on the site, it is necessary to increase the number of registered users.
Regarding the second point, I would like to create a business model that continues to generate profits so that I do not need to rely solely on donations. I know many NPOs shut down their activities because of poor finance for relying only on donation. As our solution, we have started another site MillionsLife. This is not a site for communication between registered users but features people who have reintegrated to society or work after recovering from cancer. I personally interview each person and write the articles. By using their real names and photos, the site aims to create a stronger emotional connection for the readers. I would like to increase the number of visits to the site and generate advertising revenue.
Another example is to create a 5years intranet site for companies. When I returned to work after recovering, I was supported by a number of Goldman Sachs colleagues who had recovered from cancer and returned to work before me and became my mentors. We are planning to work with companies and create sub-sites within 5years, exclusively for employees of those companies. On top of that, I would also like to either increase the number of in-person events currently held twice a year in Tokyo and Osaka or increase the scale of those events.
FIT: Please tell us about how you plan to use the FIT donations.
Okubo: Through the in-person meetings, I found that the patients who met through 5years wanted to actually meet and create real life connections. The people who have overcome cancer are like heroes to current cancer patients. Therefore, I would like to create a 5years salon in Tokyo, a permanent place where patients can casually meet each other in person. We are currently looking for a space. However, I believe that it is necessary to develop a financially stable business model in order to be able to sustainably cover the rent.
FIT: If you have a message for FIT participants, supporters, and sponsors, please share it with us.
Okubo: I believe that FIT is a wonderful initiative as it provides two crucial elements: awareness and funding. For many organisations working on social issues, the first few years are critical for survival. However, it is very difficult to receive support from companies that promote CSR due to the limited track record or because donors cannot receive tax deductions unless the organisation is a certified NPO. I believe FIT is the only organisation that provides funding of this scale to organisations facing fund raising challenges due to limited awareness. FIT is definitely an incubator for social entrepreneurs. It is truly noble of the companies and participants who understand and support the FIT philosophy and I would like to take this opportunity to express my gratitude to FIT and to everyone who has supported 5years through FIT. Thank you very much.