Day 1 :
National Institute of Public Health, Japan
Keynote: Standardization of Patient Registry. - Importance of Patient Registry for Evidence based Public Health.
Time : 09:30-10:15
Hiroshi Mizushima has his expertise in medical informatics, computer science, public health informatics, molecular biology etc. He has graduated from University of Tokyo, faculty of Pharmaceutical Science in 1983, and got PhD in 1988 at Univ. Tokyo. He established Cancer information service and Cancer Information Network at National Cancer Center. He became Professor of Medical Omics Informatics at Tokyo Medical and Dental University in 2009. He moved to National Institute of Public Health (NIPH) in 2011, and became Director of Center for Public Health Informatics at NIPH in 2017. He is currently president of Japan IT- healthcare Association and more.
A New legal structure for rare disease (nambyo) has been established in Japan in 2015, after 42 years of measures of nambyo. We have been accumulating registry for nambyo from 2003, however, as it was based on paper registration, quality was not enough. We made a prototype system for online registry used for nambyo reimbursement application. We first categorized all disease, and made standard data sets. Our new registry system will be based under ISO13606 which is a medical international standard. Authorized doctors can put in data on Line by the new system, which has data cleaning filter for accurate data entry. Patients will be supported their medical expense by authorization by this system, so the registry will be efficient. We also made Offline registry system, in case of lacking online access due to security at hospitals.
As this system for nambyo was also used for pediatric rare disease registry, it was the good example for broad range of diseases. We were asked to make a guideline for Patient registries as a government funded project in 2016. We compared PARENT which is a European project, and AHRQ which is an American guideline for patient registries. There are currently no international guideline or standard for patient registry, however, to perform patient research or integrate worldwide information, which is important in the field of rare disease. We are also trying to integrate patient reported outcomes data using patient portals.
It is very important to get patient database for “Evidence based public health”, and “precision public heath”. We are trying to integrate these information for this goal.
National Institute of Public Health, Japan
Keynote: Towards Improvement of Information Accessibility in a Care-focused mature Society : A proposed “definition of health” for a mature society
Time : 10:15-11:00
Tomoko Tachibana has her expertise in research and passion in improving the health and wellbeing. Her research on regional models for progressing toward establishment of a “Disability Registry,” using the Clinical Efficacy Database creates new pathways for improving health and welfare policies for PDs. She has been building this model over years of experience in clinical medicine, research, evaluation, teaching and administration in hospitals, public health centers and an education institution. For supporting independent decision-making and activities by PDs, and putting into practice evidence-based health and welfare policies for them, she has been advancing research to promote accumulation and utilization of epidemiological evidence data which are needed for policy evaluation, cooperation between medicine and welfare, etc. The National Institute of Public Health, whose mission is to carry out human resources development and to conduct research in public health, was established in 2002, integrating The (former) N IPH, etc.
The objective was to identify issues arising in information infrastructure development so that the Japanese public, regardless of the presence or absence of disability, can easily obtain and use information necessary for everyone, in a well-integrated society while mutually respecting personality and individuality, and to generate proposals that work towards improving information accessibility. Evidence-based public health policies were compared between cancer and trauma (injuries, damage, and sequelae). Public health policy for cancer follows the Cancer Control Act. Evidence such as survival rates is useful not only for health care providers and policymakers but also for cancer patients in executing the right to self-determination in promoting health. Meanwhile, evidence about long-term outcomes of trauma in Japan is overwhelmingly lacking, although the incidence of trauma is estimated to be comparable to that of neoplasms in the 2014 national patient survey. In recent years, we have assessed the promotion of the disability health and welfare policy, and engaged in research aimed at a “re-evaluation of disability health and welfare policy from the perspective of trauma prognosis.” To realize this review in the community-based integrated care system, we focus on the database of diagnoses, treatments, treatment effects, etc. of patients visiting medical institutions, and intend to develop a disability registry. Developing this registry utilizing clinical effect information is expected to enhance quality as evidence in health and welfare policies for people with disabilities (=PDs). In care-focused mature societies such as Japan, the following concept needs to be included in the definition of health: Taking into consideration the disease burden, and various other “social, physical and psychological problems,” health pertains to maintaining the patient’s quality of life, enabling his/her control over his/her own life, offering things that he/she can do him/herself, and fostering his/her self-actualization.