Patient Advocate and Breast Cancer Survivor
President, Cancer Solutions co, LTD (Japan)
Can you introduce yourself briefly and share your connection to patient engagement?
Naomi: Thank you very much giving me this opportunity to talk about my patient journey. I was diagnosed with breast cancer in 2004 when I was 30 years of age. That news was very shocking to me and my family and I felt very lonely because, I could not find others of the same generation. So I started a patient advocate and a peer-to-peer support programme. Now, I am a president of cancer survivor recruiting project that supports the young and working generation.
From your perspective what does a sustainable health system mean to you?
That is a very good and difficult question for me. You know in Japan, we have a great healthcare insurance system. So in terms of access to healthcare for everyone and regardless of income, we can access almost all treatments as they are covered by the public insurance system. So that is very good.
How do you think patient engagement can support sustainable health systems?
Naomi: That is a weak point for us because I’m a patient advocate so I find it’s limited. Budgets are decreasing now, especially as costs are increasing due to the financial burden of COVID-19 on the economy. We are very afraid, that there will be cost cutting for medical care. We do hope that our universal healthcare system continues but it may have to face limitations in the future. Sometimes we do collaborate with other disease organisations and are very hopeful to continue with this good healthcare system in Japan.
In what ways are patients being engaged either in your own country or other countries?
Naomi: I am a patient advocate so I am informed on such matters, but other people don’t know that medical costs are rising. They don’t know so they tend to spend a lot of money for unnecessary treatments, especially the elder people as medical costs are very low for them. They go to the hospital every day when maybe they don’t need treatment. We have a lot of unnecessary costs, so the first step we need engagement on is how to continue with a good healthcare insurance system and where there are unnecessary costs, how do we cut them .
I know you are also involved with PPI Japan that is providing platform for patient engagement in medicines development?
Naomi: Yes, that is just starting in Japan. We now are in discussions with pharmaceutical companies and researchers and also patients about the treatments coming, and how to hear the patient’s voice and also the citizen and caregiver’s voice. These platforms are set up and help to discuss the ways to continue with good sustainable healthcare system in Japan. We meet and discuss every month on how to continue, how to support and how to progress this system in Japan.
What more do you think can be done to enhance patient engagement?
Naomi: The healthcare system is very important, but on the other side, we also want to progress new drugs and new treatments, so a key point is clinical trials. Before, we could not share our voice and our experience about participating in clinical trials. Now we discuss how we are feeling attending the clinical trials or where is it difficult to access clinical trials. So we are talking about these issues now, and we have a say on this platform.
What can multistakeholder regional platforms like CAPE do to support advancing patient engagement in Asia?
Naomi: Yes I really, really hope to share all members’ experience on how to progress. We face big issues because a lot of researchers don’t want patient and public involvement (PPI), they prefer to do their work by themselves, without hearing the patient’s voice. This is a big barrier when discussing t clinical trials and medicine in Japan. So I hope to start PPI with researchers, and I want to hear from other countries, especially in Asian countries on their experiences.