The ISPACOS social networking group was launched on June 7, 2018. Here is the greeting message at the launch.
Recently, cancer research has shown remarkable developments, but one of the biggest problems is that we only see clinical trials with anti-tumor efficacy, such as tumor shrinkage and survival rate, as the primary endpoint. The evaluation of adverse events is secondary concerns, and the countermeasures against side effects are often neglected. Of course, it is important to develop therapies that show high anti-tumor efficacy, but it is about time to consider patient’s perspective. Developing therapies without patients’ suffering from adverse events and offering measures to prevent adverse events before introducing new drugs to the public are expected. The goal has been to develop effective new drugs but nothing more; however, why don’t we aim for a patient-centered Oncology that can also propose science-based countermeasures against side effects? While we are based in Japan, why don’t we aim for being international instead of just focusing on Japanese?
Starting small, but aiming to grow big, we have a great team of scientists; Dr. Tatsuro Irimura, Dr. Saito, and Dr. Masayo Komoda and Dr. Rie Ozeki, who are pioneers in Japan in research that bridges the gap between patients and medical professionals with their patient reporting system and academic detailing. And I suggest that Patients should become the core!
Dr. Irimura and Dr. Saito invited the following as initial members of the steering committee.
- Dr. Junko Sato from PMDA (Pharmaceuticals and Medical Devices Agency), the Japanese regulatory authority,
- Ms. Satomi Nagashima from PMDA (Pharmaceuticals and Medical Devices Agency), the Japanese regulatory authority,
- Dr. Hidetaka Eguchi, a scientist conducting basic research at a university,
- Ms. Nozomi Nonaka from Japan Association for Medical Translation for Cancer (JAMT)
- Ms. Yuki Saito, a pharmacist and graduate student
Two days later, on June 9, we sent out the letter to the committee members, which announced the start of ISPACOS(E) and its goals.
International Society; Most groups established in Japan are Japanese societies; however, limiting within Japan offers little potential for further growth.
Patient-centered; although the word “patient-centered” is widely used, the development of cancer treatment is based on “cancer tissue” and patients’ suffering (from side effects and symptoms of the primary disease) is left behind.
Oncology Science; Until now, there have been very few clinical trials of supportive care (to cope with side effects of cancer treatments), including those conducted overseas, that have led to basic research.
Education; To pursue internationality, novelty, and sustainability, we call an action for educating and engaging patients, families, multidisciplinary health care providers, researchers, citizens and companies to change the companies’ goals of drug development and regulations. We aim that companies to make more financial investment for supportive care consequently, and to encourage citizens, patients, and families keep demanding those changes.
Symposiums held after the commencement of ISPACOS(E)
- 1st Symposium, December 2018, 80 participants
- 2nd Symposium, June 2019, more than 160 patients
- 3rd Symposium by the Bangkok Chapter, December 2019, which was formed on a scale similar to that of Japan and participated by four Japanese members
- 4th Symposium, June 2020, online meeting (due to Coronavirus concerns), 200 participants
- 5th Symposium (online meeting from Bangkok), November 2020.
Discussion on how to fight and coexist with COVID-19 and cancer worldwide with the help of interpretation and translation.
During this time, we have also been working hard to resolve issues addressed at the symposium, such as requesting professional associations of pharmacists to strengthen privacy protection when prescribing for hereditary breast cancer and ovarian cancer syndromes. Initially, we started less than 10 steering committee members, but the number has grown to about 30 diverse members, and we are discussing future activities with enthusiasm every month.
Prospectus of ISPACOS
Clinical support for cancer patients must be provided by considering a long-term view that integrates comprehensive knowledge of the type of cancer, the stage of the disease, and the patientʼs stage of life, which is not always straight forward to achieve. When molecular-targeted drugs and the use of these drugs, under so-called precision medicine, became available in addition to conventional anticancer drugs and hormone therapy, hopes arose that cancer patients would be free from severe adverse events. However, clinical outcomes of the use of molecular targeted drugs have been puzzling and difficult to cope with at times due to the complexity of adverse events, which manifest in a variety of symptoms and degrees of severity. In some rare cases, the use of such drugs appears to aggravate rather than alleviate the disease.
How should this problematic issue be dealt with and overcome in the future? In the short term, reducing the dose or withdrawing the drug along with providing symptomatic care remains the treatment of choice. However, in the longer run, a systematic approach that aims at providing scientific explanations and guidelines for the clinical reality is needed.
Such a systematic approach involves all aspects of drug discovery, including research and development conducted by academia and the industry, drug approval by the government and regulatory agencies, and surveys and testing during the early stages of drug use done at clinical sites. Communication that bridges all fields of expertise and smooth collaboration among the above- mentioned stakeholders should be the cornerstone to success. All stakeholders in the drug discovery process should have the opportunity to receive objective information from patients as the real end users. Also, it is imperative that patients are provided with appropriate up-to-date scientific information on the pros and cons of the therapy, which can only be achieved by continued education of the medical workforce, including but not limited to physicians, nurses and pharmacists. Also, as mentioned above, high quality symptomatic care and supportive measures should always be recognized as a fundamental service for all patients.
To achieve these goals, the “International Society of Patient-Centered Oncology Science: ISPACOS” is established. We hope that ISPACOS will become a leading advocate of networking and collaboration excellence in the formation of a new framework for the advancement of cancer therapy.
Mitsue Saito, M.D., Ph.D., Representative of ISPACOS
Founding Members：Domestic （alphabetical order）
Intractable Disease Research Center/Diagnosis and Therapeutics of Intractable Diseases, Juntendo University Graduate School of Medicine (Associate Professor/Scientist)
Gotoh editorial office (Editor)
Division of Pharmacy, Medical Corporation Okinawa Tokushukai Chibanishi General Hospital (Adviser/Pharmacist)
Faculty of Pharmaceutical Sciences, Tokyo university of Science (Part-Time Professor)
Department of Breast Oncology, Juntendo University School of Medicine, (Professor and Chairperson/Surgical Oncologist)
Department of Breast Oncology, Juntendo University School of Medicine, (Assistant Professor/Pharmacist)
Department of Healthcare Information Management, University of Tokyo Hospital (Project Researcher/Pharmacist)
Laboratory of Glycobiologics, Juntendo University Graduate School of Medicine (Project Professor/Scientist)
Department of Pharmacy Pharmaceutical Affairs Division , Juntendo University Hospital (Pharmacist）
Steering Committee (II)
:Core Member-Domestic （alphabetical order）
Cancer Benefits（Representative Director/Sarcoma Survivor）
Department of Epidemiology, Kitazato University School of Medicine
Center of Preventive Medical Sciences, Chiba University
Memezawa Medical Clinic （Director/ Physician）
TERUMO CORPORATION, GENERAL HOSPITAL PRODUCTS COMPANY
Department of Public Health, Juntendo University (Associate Professor)
Research Promotion Center, Juntendo University
(University Research Administrator /Scientist)
Global Consolidated Research Institute for Science Wisdom, Waseda University
Breast Center, Juntendo University Hospital(Nurse)
Faculty of Pharmaceutical Sciences, Tokyo University of Science and Vice Director of Research Institute for Science and Technology, Tokyo University of Science (Professor/Scientist/Chemist)
Core Member-Global （alphabetical order）
Medical Coordinator, Bangkok Hospital (Physician)
The Thai Chamber of Commerce Board of Trade of Thailand
Director and Member of Executive Board,
The Thai Chamber of Commerce Committee on Wellness Business
MATSUNAGA THAILAND CO., LTD.
Managing Director, NIPPON SANGYO THAILAND CO.,LTD.
Takashi IWAMOTO (Pichaya PHORNPRAPHA)
Marketing General Manager, Tokai Hygiene Thailand
Director, Sunrise Japan Hospital（Surgeon）
Manager, Economic Research Institute for ASEAN and East Asia Healthcare Service