Global Health and International Biomedical data sharing

1. the fourth meeting of the US-China Roundtable on Scientific Data Cooperation Global Health and International Biomedical data sharing Depei Liu, MD, Ph.D. Chinese Academy of Medical Sciences & Peking Union Medical College MAR 29 ,2010

2. Abstract  １. Global Health 2. Progress of biomedical data sharing in China 3. Cooperation of Sino-US biomedical data sharing

3. Background Health is a topic relating to 6.8 billions people in the world. In 2000, US releases “Healthy People 2010” document. In 2000, Japan releases “Healthy Japan 21” . In 2008, China’s Health Minister Chen Zhu initiates “Healthy China 2020”. In 2008, WHO Director-General Margaret Chan initiates “Healthy World 2020”.

4. Health Concept • Health concept continues to improve along with societal development. • In1948, WHO defines Health as “a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.” • In China, Health is understood as：无病无弱、身心健全、社会适应、环境和谐 (no diseases and no infirmity, physical, mental and social well-being, environmental harmony)

5. Major Health Challenges Human Faced • Aging population • Health and environment issues • Health protection for vulnerable populations: Women and children Elderly Disabled • Mal-distribution of health care services.

6. Trauma and Disaster Infectious Diseases Chronic Diseases Major Diseases Threatening Human Health -Infection Hepatitis AIDS, TB, STD Emerged re-emerging infections Neglected Diseases Hypertension Diabetes Cancer Cardiovascular & cerebro-vascular diseases

7. Rising Medical Costs is a worldwide Problem Disease-centered, technology-driven Western medical service model raises medical costs, making medical insurance a worldwide problem.

8. Improve equity of medical services • Reduce the disparity between developed and developing countries, urban and rural areas. • Fully use and share medical resources. • Increase medical investment and increase health protection level and social benefits. • It is necessary to have a scientific data sharing platform for Healthy World.

9. Paradigm Shifting in Medicine • From biomedical model to environmental-societal-psycho-engineering-biomedical model; • From allopathic medicine to holistic medicine; • From study on disease itself to study a complete process of life and disease through a holistic, multiple angles, inside and outside the disciplines and systems; • From emphasizing on diagnosis and treatment of later stage of diseases to emphasizing on disease prevention and control, and the health surveillance for a complete life process.

10. Healthy China 2020 ◆August 2007: Ministry of Health proposed Healthy China 2020 strategic study plan ◆ Feb. –Dec. 2008: Started Healthy China 2020 strategic study ◆ 2009-2010: Top design, demonstration phase.

11. Healthy China 2020 ◆Step 1：By the year 2010, set up framework for a basic medical and health care system, and China joins the family of countries with a national basic health care plan; ◆Step 2：By the year 2015, preliminarily set up basic medical and health care system, and China becomes a leading country among developing world in providing medical and health care; ◆Step 3：By the year 2020, establish a relatively complete medical care system covering urban and rural residents, providing basic medical care services for all, and significantly enhance citizens’ health level.

12. Healthy China 2020 ◆Healthy China 2020 is a long-term strategic plan for health development at the state level; ◆The goal is to improve the health quality of the entire nation, and to provide basic medical care services for all; ◆To provide an action plan for medical care, health, administration, and scientific and technological support; ◆To provide a road map for realization of health protection for all.

13. Scientific Data Center and Coordinated Network Research Environment Construction • Establish National Population and Health Scientific Data Center and Coordinated Network Research Environment; • Including Population and Reproductive Health, Basic Medicine, Clinical Medicine, Public Health, Traditional Chinese Medicine, and Pharmacy; • Unify data criteria and rules, and integrate population and health data resources; • Provide scientific and technological support, data sharing, and information services for “Healthy China 2020”.

14. Abstract １. Global Health 2. Progress of biomedical data sharing in China 3. Cooperation of Sino-US biomedical data sharing 

15. Main Frame of Population and Health Scientific Data Sharing Network Service goals Clinical Medical Data Center Reproductive Health Data Center Basic Medical Data Center Public Health Data Center TCM Data Center Pharmacy Data Center Technical Platform Construction Data Resource Construction Standard and Criterion Construction Network Management and Operation( Project Office) Local Service Node Local Service Node Health policy Innovation Advancement Public Health Health Industry Subject databases Subject databases Population and Health Scientific Data Sharing Network www.ncmi.cn

17. Network hardware environment for biomedical data sharing in China • Linked respectively to www.cstnet.net.cn (China science) www.edu.cn (China education) • Expedient data sharing and exchange among leading science research institutions in China • Connected to CNGI, capable of IPV6 functionality. • The present main computation cluster can work at 12 trillion times per second, and the auxiliary cluster up to 10 trillions/second, including:

18. Network hardware environment for biomedical data sharing in China • Sequence analysis (BLAST, FASTA, Smith-aterman, Hmmer, Genescan); • Quantum chemistry (GAMESS、Gaussian); • Molecular simulation (NAMED, Amber, CHARMM); • Protein compound docking (DOCK, AutoDock, GlIDE, Jaguar, Macromodel, MOE); • Protein patterns analysis (Mascot); • Others (R, Unigene).

19. Network hardware environment for biomedical data sharing in China

20. Clinical Research Teaching Drug Production Ancient books Hospital Management Clinical Medical Data Resources Rehabilitation Information Diagnostic Information Treatment Information Nursing Information Epidemiology PharmacyData Resources Basic Public Health Information Health Risk Factors Information TCM R&D Drug Research & Development Pharmacy Management Drug Resources Chinese Medicine Data Resources Chinese Herbal Medicine Chinese Medicine Drug Use Basic Medical Data Resources Public Health Data Resources Diseases Information Acupuncture Body Function Medical Biology Anatomy Data Resources Planning System Medical Scientific Data Resources Analysis

21. MSDSP Provide data-set-based special display services Provide subject-oriented data searching services Provide data-integration-oriented all-purpose display services Provide all-purpose, convenient resource-conforming tools TCM clinic PH basic MSDSP General Center Cross the physical unit for one subject Physical data store for sharing resource Resource Architecture Construction Resource survey, classified description, resource manual compilation, resource management and sharing function regulation Resource plan Resource design The basic unit of sharing resource from data centers Data set Core Database Subject database Design and development of resource planning software

22. Standard about Management & Construction MSDSP Standard aboutService Standard about Data Sharing resource construction Technology platform construction MSDSP General Center Physical center construction Standard & Specification Construction Following the standard of National Scientific Data Sharing , According to the actuality of medical field Metadata Data element Data mode Classification and coding 1. Study the top standard of National Scientific Data Sharing Project ; 2.Collect and compile the internal and external terms, codes, and mode standards in medical field 3. Study and establish the special standard for MSDSP; 4.Designing and development of standard software. Data discovery Data visit Data expression Data operation Concept and terminology Management standards Construction standards Standard consistency test

23. Number of datasets shared online Visitors Data volume shared online 3. Platform operations

24. 芬 兰 瑞典 挪 威 俄罗斯 爱沙尼亚 丹麦 加拿大 英国 德国 波兰 比利时 法国 西班牙 美国 意大利 塞浦路斯 韩国 日本 埃及 沙特阿拉伯 中国台湾 香港 非律宾 印度 意大利 新加坡 韩国 巴西 澳大利亚 南非 阿根廷 新西兰 Users all over the world

25. Overseas users of China population and health science data sharing platform 国际用户地区排名统计 USA 17.20%

26. MSDSP Data Resource Integration Organization Modes of Data Resource According to the different layers , the organization modes of data resource include : 1 . Medical Scientific Data Sharing Network 2 . Specialty Scientific Data Center 3 . Core Database & Subject Database 4 . Sharing Data set

27. MSDSP Team Construction Specialized team for biomedical scientific data sharing includes: （1）Standardization staff （2）Computerized automation staff （3）Information management staff （3）Data sharing application staff （4）Data sharing research staff

28. Ⅰ Example of basic medical Scientific Data Center Application www.bmicc.cn www.bmicc.org

29. Function of Population and Health Scientific Data Sharing responding to Natural disasters • 12th May 2008, a 8.0 earthquake happened in Wenchuan, Sichuan Province. It caused a series of population and health problems of social, economic and natural problems, which was beyond one certain department, industry, profession or discipline. • The network launched the after-earthquake Population and Health Scientific Database construction. With the cooperation between the National Population and Family Planning Commission, the Sichuan Provincial Family Planning Commission, the Sichuan Provincial Health Department and earthquake relief medical service organizations such as PLA General Hospital and West China Hospital of Sichuan, it formed a cross-sectoral coordination mechanism, and provided decision-making data for reconstruction and future population and health contingency plan.

30. Ⅰ Example of basic medical Scientific Data Center Application www.bmicc.cn www.bmicc.org

31. Ⅰ Example of basic medical Scientific Data Center Application Chinese Physical Constants Database

32. Chinese Digital Human Data Sets

33. China National Stroke Registry 50 • Established a supervision and appraisal registration platform for medical service quality of acute cerebral accidents. This platform covers nationwide (including 32 provinces and autonomous regions and HKSAR, totaling 132secondary and tertiary hospitals) • 20150cases have been locked in the 1-year follow-up database.

34. Examples of Database Applications

35. Design of pathology theme database Case study (1) Design of the theme database for National Database of Diagnostic Pathology of Difficult Diseases: Collection and compilation of the cases presented to national pathology meetings and to the diagnostic pathology meetings organized by the pathology branches in the localities in recent three years. All typical cases, difficult cases, and cases with complete auxiliary lab tests, complete data, clear diagnosis and thorough discussions may be included. These cases are classified according to anatomical locations and systems of the disease, in addition to categorizing of the users. Via a shared network, the users may register and enjoy categorized authorizations for services.

36. Public Health Scientific Data Center Cause of Death Data Sets Static Query

37. ⅡPublic Health Scientific Data Applications Cause of Death Data Sets Static Query

38. Public Health Scientific Data Applications Cause of Death Data Sets online Analysis Model

39. Clinical Medicine Scientific Data Center

40. Compound’s physio-chemical nature, biological activity and chemical structure are available, and the chemical structure can be displayed, edited and downloaded. Medicinal Natural Bioactive Products Databases

41. Traditional Chinese Medicine Scientific Data Center

42. TCM Scientific Data Center

43. Rural health data

44. China’s rural three-level medical and health services network construction

45. Training doctors for hospital at grass root level by the Data Sharing Network in 2009

46. Population and Health Scientific Data Sharing responding to Natural disasters • 12th May 2008, a 8.0 earthquake occurred in Wen Chuan, Si Chuan Province. It caused a series of population and health problems that were beyond ability of any one department, industry, profession, or discipline to deal with. • The network launched the after-earthquake Population and Health Scientific Database construction.

47. Earthquake Relief Scientific Data Sharing Services on Public Health Emergencies

49. Abstract １. Global Health 2. Progress of biomedical data sharing in China 3. Cooperation of Sino-US biomedical data sharing 

50. Cooperation Tradition • China and US has long history of cooperation in medicine • Peking Union Medical College is one of the best model of cooperation, which was built by Rockfeller Foundation • To introduce modern western medicine to China • China Medical Board independent from Rockfeller Foundation in 1928 still closely works with 13 Chinese medical schools in capacity building and public health, including medical informatics field.