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

Introduction

◇ Medical 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

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

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 2010-20112002-2004 2005-2009

Program management

(1)National cientific Data Sharing Platforme for Population and Health

(1)National cientific Data Sharing Platforme for Population and Health

Local node

Platform Commission

Platform office

Management Center Population and Health Data Sharing

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Users

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Basic medicineData center

Clinical medicineData center

Public healthData center

ChinesemedicineData center

Pharmacy Data center

Population&reproductivehealthData center

Academic associations/research groups Local nodes

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Framework of support and organization

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 center China 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 DrugAdministration ;Institute of Pharmacy Sciences , CAMS

Population& reproductiveHealth Data center

Institute of science and Technology Research forNational 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

Total of specialists engaged 1149

Academic titles

Senior titles 460 40.03%

Middle titles 572 49.78%

Junior titles 117 10.18%

Age

20-30 282 24.54%

30-40 405 35.25%

40-50 275 23.93%

50 above 187 16.28%

Functions

Administrators 59 5.13%

Researchers 668 58.14%

Technical supporters 321 27.94%

Data sharing service staff 101 8.79%

National Platforme of cientific Data Sharing for Population and Health

Chinese Physical Constants Database

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

Public Health Scientific Data Center

Traditional Chinese Medicine Scientific Data Center

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

Demographic statistics of population and health science data sharing platform

Actively push the sharing information to urban communities and rural areas

the analysis results of rural health data

China rural three-graded health service network

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

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

(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

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.

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.

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.

Resources submission system for National science and technology projects

Submission of clinical scientific data resource about chinese deaf patients

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

国际用户地区排名统计

Overseas users of China population andhealth science data sharing platform

USA 17.20%

澳大利亚

美国

韩

国

印度

加拿大

意

大

利

香港

沙特阿拉伯

新加

坡

巴西

芬

兰瑞典

挪

威

英国 丹麦

法国西班牙

日本

中国台湾

韩国

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

Suggestions1. 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