1. Data Sharing of Medical and Health The Fifth meeting of US-China Roundtable on Scientific Data Cooperation Depei Liu, MD, Ph.D. National Center for the Management and Sharing of Population and Health Data Chinese Academy of Medical Sciences & Peking Union Medical College 2011-10-27

2. Introduction ◇ M edical science data sharing working ten years. ◇ Sino-US scientific data sharing roundtable five times ◇ National Population and Health Scientific Data Sharing Platform(NPHDSP) working in 2011 - NPHDSP into a stage of long-running and server - supported by national budget - To provide data sharing services for some major projects - To provide special services

3. 1. National population and health data sharing platform for scientific progress 2. Scientific data collection in the field of population and health 3. International cooper ation in medical science data sharing 

4. Resource survey Needs analysis Standards & norms Resource system Technology platform Data center Program management Needs analysis standards and norms Resource system construction Technology platform construction basic medicine, clinical medicine, public health, TCM, Pharmacy Sharing node construction Resource survey Content 2010-20112002-20042005-2009 Program management (1)National cientific Data Sharing Platforme for Population and Health Local node

6. Platform Commission Platform office Management Center Population and Health Data Sharing Tech platformResourcebuildingStandard normsInt’lcoopperation Specialist sdecisionmakersUserscommittee Basic medicine Data center Clinical medicine Data center Public health Data center Chinese medicine Data center Pharmacy Data center Population& reproductive health Data center Academic associations/research groupsLocal nodes User serviceSupervision andcomments Framework of support and organization

7. Basic medicine data center Institute of Basic Medical Sciences, CAMS Clinical medicine data center Peking Union Medical College Hospital, CAMS ; PLA General Hospital Public health data centerChina Center for Disease Control and Prevention Traditional Chinese medicine data center China Academy of Chinese Medical Sciences Pharmacy main database Information Center of State Food and Drug Administration ; Institute of Pharmacy Sciences, CAMS Population& reproductive Health Data center Institute of science and Technology Research for National population and Family Planning National Bureau of Statistics (sixth population census) National Platforme of cientific Data Sharing for Population and Health Specialty Scientific Data Center

8. Total of specialists engaged 1149 Aca de mic title s Senior titles 46040.03% Middle titles 57249.78% Junior titles 11710.18% Age 20-30 28224.54% 30-40 40535.25% 40-50 27523.93% 50 above 18716.28% Fun ctio ns Administrators 595.13% Researchers 66858.14% Technical supporters 32127.94% Data sharing service staff 1018.79% National Platforme of cientific Data Sharing for Population and Health

10. Chinese Physical Constants Database

11. 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 through 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. Design of pathology theme database

12. Public Health Scientific Data Center

13. Traditional Chinese Medicine Scientific Data Center

15. 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

16. Demographic statistics of population and health science data sharing platform

17. Actively push the sharing information to urban communities and rural areas

18. the analysis results of rural health data

19. China rural three-graded health service network

20. Health Topics Services for rural three-graded medical care in China

21. 1. National population and health data sharing platform for scientific progress 2. Scientific data collection in the field of population and health 3. International cooper ation in medical science data sharing 

22. (2) “ 十一五 ” 国家科技计划人口健康领域科技资源汇交 Resources submission for National science and technology projects 人口健康领域项目数据 共计 2269 基础医学 ( Basic medicine ) 906 临床医学 ( Clinical medicine ) 597 药学 (Pharmacyr) 332 中医药 (TCM) 227 公共卫生 (Public health) 197 人口与生殖健康 (Population& Reproductive healthData center) 6

23. Data collection principle 1. Full collection principles: the formation of scientific and technological projects of information technology resources should be in principle collection to the state-designated Science and Technology Infrastructure 2. Principle of efficiency increase: the resources to collect and submit the issue and acceptance of work and project coordination to promote the combination of full use of inspection work in the basis for the work already 3. Principles of authenticity and reliability: the converging requirements of true and reliable technology resources to ensure quality.

24. Organization and management of data collection 1.Collection led by the planning department, the National Science and Technology Infrastructure Center, responsible for organizing. 2. Department of the first subject holder is responsible for organizing the specific subject of science and technology resources to collect the project unit, supervision, and review. 3. Project Leader in charge of scientific and technological resources sorting, processing and collection to ensure the integrity of scientific and technological resources.

25. Collecting objects and methods 1.collection work is mainly through a network approach. Enter the "national scientific and technological projects and technological resources collection system" by logging into China Science and Technology Resource sharing Network (www.escience.gov.cn), collection to carry out the work. 2. The scientific and technological resources that can not be collected through network, the CD-ROMs are required to be submitted to the National Science and Technology Infrastructure.

27. Resources submission system for National science and technology projects Submission of clinical scientific data resource about chinese deaf patients

28. 1. National population and health data sharing platform for scientific progress 2. Scientific data collection in the field of population and health 3. International cooper ation in medical science data sharing 

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

30. 澳大利亚 美国 韩国韩国 印度 加拿大 意大利意大利 香港 沙特阿拉伯 新加坡新加坡 巴西 芬兰芬兰 瑞典 挪威挪威 英国 丹麦 法国 西班牙 日本 中国台湾 韩国 德国德国 比利时 意大利 波兰 埃及 俄罗斯 塞浦路斯 新西 兰 南非 非律宾 爱沙尼亚 阿根廷 Users all over the world

31. Suggestions 1. International Cooperation Working Group of Medical and Health Scientific data sharing to be established. 2. The standards of scientific data sharing in the field of medical and health to be drawn up. 3. Creating international medical and health service platform of scientific data sharing. 4. Integration of global Medicine and Health Scientific data resources 5. Provide global medical and health scientific data sharing services