*The English version of the policy recommendations will be published at a later date.

Health and Global Policy Institute (HGPI) has released policy recommendations titled, “Policy Recommendations in the Field of Blood Disorders: Building a Patient-Centered Healthcare Ecosystem”. These recommendations aim to achieve a society where all blood disorder patients can continue to live their life as they wish, with peace of mind and in familiar surroundings. To achieve this, ten policy recommendations across four pillars are presented in this report.

Blood disorder care in Japan is at a historic turning point. Breakthroughs, such as the introduction of molecularly targeted medications, bispecific antibodies, and CAR-T therapy have made long-term survival a reality for many blood disorders that were once considered to have poor prognosis. Due to the success of this “curative medicine”, many blood disorders have shifted from conditions that once required intensive acute treatment to chronic diseases that can now be managed over the long term. Building on that success, the field is now expected to develop further towards “medicine that supports living with illness,” supporting patients in living life as they wish.

At the same time, the current healthcare system is designed mainly for acute inpatient treatment. Of all hematologists in Japan, 97.5% work in hospitals and the level of medical care across different regions and the coordination with local medical institutions is still not sufficient. In addition, the number of new blood cancer cases is estimated to rise significantly by 2040 across Japan, driven largely by an aging population. As the working-age population continues to decline, the development of a sustainable patient-centered healthcare ecosystem has become an urgent priority.

Building on the “Discussion Paper: Current Challenges and Prospects in Promoting Control of Blood Disorders” compiled in FY2024, HGPI has repeatedly engaged in dialogues and hearings with a broad range of stakeholders across industry, government, academia and civil society to develop the following ten policy recommendations across four pillars.

Pillar 1: Building a Multi-Layered Medical Collaboration System

• Recommendation 1-1: Clarify the division of roles between highly specialized care and ongoing follow-up care, and develop an optimal healthcare delivery system tailored to each patient’s condition.
• Recommendation 1-2: Build a system that allows patients to continue treatment with peace of mind through collaboration between specialized medical institutions and local healthcare institutions.
• Recommendation 1-3: Promote home-based blood transfusions and chemotherapy to create an environment where patients can receive care with peace of mind within their communities and in familiar surroundings.
• Recommendation 1-4: Build a system for comprehensive patient support by promoting multidisciplinary team-based medicine that leverages diverse professional expertise and by strengthening coordination functions.

Pillar 2: Patient-Centered Medical Communication and Support

• Recommendation 2-1: Establish a decision-making support environment so that patients can obtain sufficient information and make their own treatment decisions.
• Recommendation 2-2: Strengthen consultation support systems and promote peer support to reduce patients’ psychological and social burden.

Pillar 3: Healthcare DX and Information Sharing

• Recommendation 3-1: Establish a system that allows for efficient sharing of clinical information between specialized medical institutions and local healthcare institutions.
• Recommendation 3-2: Establish a system that enables patients to track and understand their treatment progress and engage in two-way information sharing with their healthcare providers.

Pillar 4: Institutional Support and R&D

• Recommendation 4-1: Establish an institutional framework based on the characteristics of blood disorders to ensure a sustainable healthcare delivery system and equitable patient cost-sharing.
• Recommendation 4-2: Enhance international competitiveness in the field of hematology by strengthening clinical research and clinical trial infrastructure and building an innovation ecosystem.

■Blood Disorders Project Advisory Board (Titles omitted, in Japanese alphabetical order)
Ayako Arai (Professor and Chair, Department of Hematology and Oncology, St. Marianna University School of Medicine)
Kota Ohashi (Director, Totus Homecare Clinic; Representative, NPO Hemato-Homecare Network)
Ryutaro Kobayashi (Representative, The Association of Chronic Myeloid Leukemia Patients and Families “Izumi”)
Akifumi Takaori-Kondo (Director, Kyoto University Hospital; President, the Japanese Society of Hematology)
Tomoiku Takaku (Professor, Department of Hematology, Saitama Medical University Hospital)
Akiko Hashimoto (President, NPO Tsubasa Information Platform for Patients with Blood Disorders)
Mei Haruya (Executive Officer and Head of Hematology Oncology Business Unit, Novartis Pharma K.K.)
Shinsuke Muto (President, Tetsuyu Institute Medical Corporation)
Masakazu Yamaguchi (Department Director of Pharmacy, the Cancer Institute Hospital of JFCR)
Ken Watanabe (Director, Hare no Terrace Sukoyaka Clinic)
Lisa Machado (Founder, Canadian CML Network)

■Interview Participants (Titles omitted, in Japanese alphabetical order)
Koji Izutsu (Chief, Department of Hematology, National Cancer Center Hospital)
Kensuke Ohta (Chairman, Medical Corporation LIGARE, Hematology Ohta Clinic, Shinsaibashi)
Junichi Kawata (Project Research Fellow, Department of Public Policy, Institute of Medical Science, University of Tokyo / Vice President, The Association of Chronic Myeloid Leukemia Patients and Families “Izumi”)
Yoshinobu Kanda (Professor, Department of Internal Medicine, Division of Hematology, Jichi Medical University)
Tetsuo Kume (Department of Pharmacy, Shizuoka Cancer Center)
Koichiro Kobayashi (Member of the House of Councillors of Japan)
Takanori Teshima (Professor, Department of Hematology, Hokkaido University Faculty of Medicine / President, Japanese Society for Transplantation and Cellular Therapy / Vice President, The Japan Society of Transfusion Medicine and Cell Therapy)
Hiroto Narimatsu (Division Chief, Research Institute Cancer Prevention and Control Division, Kanagawa Cancer Center / Professor, Graduate school of Health Innovation, Kanagawa University of Human Services)
Naohiro Miyashita (Director, HOME CARE CLINIC N-CONCEPT)

These policy recommendations are based on discussions and interviews HGPI held for this project and have been compiled in HGPI’s capacity as an independent health policy think-tank. It does not, in any capacity, represent the opinions of any participating expert, speaker, related party, or organization to which those parties are affiliated.

We hope that these recommendations will serve as a starting point for constructive discussions to further advance blood disorder care, and that through collaboration among stakeholders, they will contribute to building a sustainable healthcare ecosystem centered on patients and those affected.

For details, please view the PDF provided below.