专题:医学知识组织与挖掘

临床研究场景下医疗数据控制者共享影响因素及提升策略研究

  • 张萌 ,
  • 牟冬梅 ,
  • 张宁 ,
  • 王萍 ,
  • 张胜霞 ,
  • 吴飞 ,
  • 张幸娜 ,
  • 刘露露
展开
  • 1 吉林大学公共卫生学院 长春 130021;
    2 吉林大学第一医院 长春 130021;
    3 医渡云(北京)技术有限公司 北京 100083;
    4 上海森亿智能科技有限公司 上海 200020;
    5 神州医疗科技股份有限公司 北京 100089
张萌,博士研究生;牟冬梅,教授,博士,通信作者,E-mail:moudm@jlu.edu.cn;张宁,硕士研究生;王萍,博士后;张胜霞,商务经理;吴飞,项目经理;张幸娜,硕士;刘露露,产品经理。

收稿日期: 2025-06-11

  修回日期: 2025-08-15

  网络出版日期: 2026-04-08

基金资助

本文系国家自然科学基金项目“‘知识—数据’双轮驱动的多模态电子病历数据组织模式与应用研究”(项目编号:72374081)和吉林省科学技术厅重点研发项目“面向健康自主管理的个人诊疗信息平台开发与应用”(项目编号:20240304164SF)研究成果之一。

Research on Influencing Factors and Enhancement Strategies of Medical Data Controller Sharing in Clinical Research Scenarios

  • Zhang Meng ,
  • Mu Dongmei ,
  • Zhang Ning ,
  • Wang Ping ,
  • Zhang Shengxia ,
  • Wu Fei ,
  • Zhang Xingna ,
  • Liu Lulu
Expand
  • 1 School of Public Health, Jilin University, Changchun 130021;
    2 The First Hospital of Jilin University, Changchun 130021;
    3 Yidu Cloud Technology Inc., Beijing 100083;
    4 Shanghai Senyi Intelligent Technology Co., Ltd, Shanghai 200020;
    5 Digital Health China Technologies Co., Ltd, Beijing 100089
Zhang Meng, Doctoral Candidate;Mu Dongmei, Professor, PhD, Corresponding Author, E-mail:moudm@jlu.edu.cn;Zhang Ning, Master’s Candidate;Wang Ping, Postdoc;Zhang Shengxia, Business Manager;Wu Fei, Project Manager;Zhang Xingna, Master’s Degree;Liu Lulu, Product Manager.

Received date: 2025-06-11

  Revised date: 2025-08-15

  Online published: 2026-04-08

Supported by

This work is supported by the National Natural Science Foundation of China project titled “Research on the Organization Model and Application of Multi-Modal Electronic Medical Record Data Driven by ‘Knowledge-Data’” (Grant No. 72374081); Jilin Provincial Department of Science and Technology project titled “Development and Application of Personal Diagnosis and Treatment Information Platform for Health Self-Management” (Grant No. 20240304164SF).

摘要

[目的/意义] 医疗数据的共享与利用是推动临床科研、释放数据价值的关键,深入挖掘我国临床研究场景下医疗数据控制者共享的影响因素,揭示多因素协同提升共享实践的路径,为医疗机构科研大数据平台建设及共享实践提供重要参考。[方法/过程] 基于动机—机会—能力、社会资本、计划行为等理论挖掘影响控制者共享医疗数据的重要因素,并构建临床研究场景下医疗数据控制者共享实践的分析框架,应用层次分析法计算影响因素及指标权重。以国内15个医疗机构科研大数据平台为案例样本,从组态的定性视角结合层次分析的权重定量探索医疗数据共享影响因素维度之间的协同共线性。[结果/结论] 研究表明,不存在影响医疗数据控制者共享实践的单个非必要条件,医疗数据控制者共享实践的组态构型可归纳为“动机—机会—能力”型、“机会—能力”型和“动机—机会”型。其中,动机维度下的互惠和能力维度下的数据质量在推动医疗数据控制者共享实践中发挥关键作用,机会维度下的政策支持具有更广泛的普适性作用。未来应进一步深化互惠共识与协作机制,强化内在“动机”;构建全流程数据质量管理体系,夯实“能力”基础;细化政策引导与风险管控,巩固“机会”。

本文引用格式

张萌 , 牟冬梅 , 张宁 , 王萍 , 张胜霞 , 吴飞 , 张幸娜 , 刘露露 . 临床研究场景下医疗数据控制者共享影响因素及提升策略研究[J]. 图书情报工作, 2026 , 70(8) : 19 -30 . DOI: 10.13266/j.issn.0252-3116.2026.08.002

Abstract

[Purpose/Significance] The sharing and utilization of medical data is the key to promoting clinical research and unlocking the value of data. This paper deeply explores the influencing factors of medical data controller sharing in China's clinical research scenarios, and reveals the path of multi-factor collaborative improvement in sharing practices. It aims to provide important references for the construction of scientific research big data platforms and sharing practices in medical institutions. [Method/Process] Based on motivation-opportunity-ability(MOA), social capital, and planned behavior theories, this study identifies key factors influencing data sharing by medical data controllers and constructs an analytical framework for this practice in clinical research scenarios. It applies the analytic hierarchy process(AHP) to calculate the influencing factors and index weights. Taking the scientific research big data platforms of 15 domestic medical institutions as case samples, this paper explores the colinearity among the influencing factors of medical data sharing from the qualitative perspective of configuration combined with the quantitative weight of analytic hierarchy process. [Result/Conclusion] The findings show that there is no single unnecessary condition that affects the sharing practice of medical data controllers. Three effective configurations are identified: “motivation-opportunity-capability”, “opportunity-capability”, and “motivation-opportunity” type. Among them, reciprocity under the motivation dimension and data quality under the ability dimension have played a key role in promoting the sharing practice of medical data controllers, while policy support under the opportunity dimension has a broader and more universal effect. In the future, the mutually beneficial consensus and collaboration mechanism should be further deepened, and the internal “motivation” should be strengthened. It should build a full-process data quality management system to consolidate the “capability” foundation, and refine policy guidance and risk control to consolidate “opportunities”.

参考文献

[1] 国家数据局.国家数据局等部门关于印发《“数据要素×”三年行动计划(2024-2026年)》的通知[EB/OL].[2025-10-04]. https://www.cac.gov.cn/2024-01/05/c_1706119078060945.htm.(National Data Administration. Notice of the national data administration and other departments on issuing《“Data elements×” three-year action plan(2024-2026)》[EB/OL].[2025-10-04].https://www.cac.gov.cn/2024-01/05/c_1706119078060945.htm.)
[2] 马费成,王文慧,孙玉姣,等.数字产业化与产业数字化协同发展中的数据价值实现[J].信息资源管理学报,2024, 14(4):4-15.(MA F C, WANG W H, SUN Y J, et al. The realization of data value in the collaborative development of digital industrialization and industrial digitization[J]. Journal of information resources management, 2024, 14(4):4-15.)
[3] SCHEIBNER J, RAISARO J L, TRONCOSO-PASTORIZA J R, et al. Revolutionizing medical data sharing using advanced privacy-enhancing technologies:technical, legal, and ethical synthesis[J]. Journal of Medical Internet Research, 2021, 23(2):e25120.
[4] GB/T 39725-2020,信息安全技术-健康医疗数据安全指南[S].[2025-10-04]. https://www.antpedia.com/standard/1068117266-1.html.(GB/T 39725-2020, Information security technology:guide for health data security[S].[2025-10-04]. https://www.antpedia.com/standard/1068117266-1.html.)
[5] KIM H, KIM B, JOO S, et al. Why do data users say health care data are difficult to use? A cross-sectional survey study[J].Journal Of Medical Internet Research, 2019, 21(8):e14126.
[6] GENEVIÈVE L D, MARTANI A, MALLET M C, et al. Factors influencing harmonized health data collection, sharing and linkage in Denmark and Switzerland:a systematic review[J].PloS one, 2019, 14(12):e0226015.
[7] VICKERS A J. Sharing raw data from clinical trials:what progress since we first asked“Whose data set is it anyway?”[J].Vickers Trials, 2016, 17:227.
[8] HUTCHINGS E, LOOMES M, BUTOW P, et al. A systematic literature review of researchers’ and health-care professionals’attitudes towards the secondary use and sharing of health administrative and clinical trial data[J]. Systematic reviews,2020, 9(1):240.
[9] 陈少敏,陈爱民,梁丽萍.医疗大数据共享的制约因素及治理研究[J].卫生经济研究, 2021, 38(9):18-20, 24.(CHEN S M, CHEN A M, LIANG L P. Research on restrictive factors and governance of medical big data sharing[J]. Health economics research, 2021, 38(9):18-20, 24.)
[10] 石晶金,袁瑞,冯雨萱,等.跨区域专科联盟数据共享建设现状、影响因素与策略分析[J].医学信息学杂志, 2023,44(11):30-34.(SHI J J, YUAN R, FENG Y X, et al. Analysis on the current situation, influencing factors and strategies of data sharing in cross-regional specialty medical alliances[J]. Journal of medical informatics, 2023, 44(11):30-34.)
[11] TAN A C, ASKIE L M, HUNTER K E, et al. Data sharingtrialists’ plans at registration, attitudes, barriers and facilitators:a cohort study and cross-sectional survey[J]. Research synthesis methods, 2021, 5(12):641-657.
[12] MACINNIS D J, JAWORSKI B J. Information processing from advertisements:toward an integrative framework[J]. Journal of marketing, 1989, 53(4):1-23.
[13] 孙玉伟,戚景琳,刘超,等.社会科学科研人员数据复用行为影响因素研究:MOA框架下的探索[J].情报理论与实践, 2021, 44(10):90-99, 64.(SUN Y W, QI J L, LIU C, et al.Research on the influencing factors of data reuse behavior of social science researchers:an exploration under the framework of MOA[J]. Information studies:theory&application, 2021,44(10):90-99, 64.)
[14] 彭丽徽,蒋欣.虚拟社区感知视角下用户知识创新行为影响因素研究[J].现代情报, 2023, 43(2):86-95.(PENG L H,JIANG X. Research on the influencing factors of user knowledge innovation behavior from the perspective of sense of virtual community[J]. Journal of modern information, 2023, 43(2):86-95.)
[15] 杜运周,贾良定.组态视角与定性比较分析(QCA):管理学研究的一条新道路[J].管理世界, 2017(6):155-167.(DU Y Z,JIA L D. Configuration perspective and qualitative comparative analysis(QCA):a new path in management research[J].Management world, 2017(6):155-167.)
[16] 冯媛,郭永辉,李杰. TOE框架下我国科学数据开放平台共享服务能力提升研究[J].图书情报工作, 2024, 68(1):106-115.(FENG Y, GUO Y H, LI J. Improving the sharing service of open scientific data platform with the TOE framework in China[J]. Library and information service, 2024, 68(1):106-115.)
[17] 陈晔婷,黄曾媛,刘金涛,等.中国-东盟跨境数据共享的影响因素与驱动路径研究:基于TOE框架的fsQCA与NCA分析[J].世界经济研究, 2024(11):108-119, 137.(CHEN Y T, HUANG Z Y, LIU J T, et al. Research on influencing factors and driving paths of China-ASEAN cross-border data sharing:fsQCA and NCA analysis based on TOE framework[J]. Word economy studies, 2024(11):108-119, 137.)
[18] 郭安琪,袁曦临,钱鹏,等.政府数据开放共享水平影响因素的条件组态研究——基于NCA与fsQCA联动效应分析[J].情报探索, 2025(1):10-18.(GUO A Q, YUAN X L, QIAN P, et al. Conditional configuration of factors affecting the level of open sharing of government data:based on the linkage effect analysis of NCA and fsQCA[J]. Information research, 2025(1):10-18.)
[19] 莫祖英,郭一鸣,闵世杰,等.组态视角下社交媒体用户虚假健康信息易感性影响因素研究[J].图书情报工作, 2024,68(21):93-106.(MO Z Y, GUO Y M, MIN S J, et al. Research on factors influencing susceptibility to health misinformation among social media users from the configuration perspective[J].Library and information service, 2024, 68(21):93-106.)
[20] NAHAPIET J, GHOSHAL S. Social capital, intellectual capital, and the organizational advantage[J]. The academy of management review, 1998, 23(2):242-266.
[21] YAN Z J, WANG T M, CHEN Y, et al. Knowledge sharing in online health communities:a social exchange theory perspective[J]. Information&management, 2016, 53(5):643-653.
[22] 邓胜利,夏苏迪,许家辉,等.组态视角下在线健康社区医生知识贡献影响因素研究[J].情报理论与实践, 2022,45(7):132-139.(DENG S L, XIA S D, XU J H, et al. Research on factors affecting knowledge contribution behavior of physicians in online health community from the configuration perspective[J]. Information studies:theory&application, 2022,45(7):132-139.)
[23] NAHAPIET J, GHOSHAL S. Social capital, intellectual capital, and the organizational advantage[J]. The academy of management review, 1998, 23(2):242-266.
[24] 彭昱欣,邓朝华,吴江.基于社会资本与动机理论的在线健康社区医学专业用户知识共享行为分析[J].数据分析与知识发现, 2019, 3(4):63-70.(PENG Y X, DENG Z H, WU J. Analysis of knowledge sharing behavior of medical professional users in online health communities based on social capital and motivation theory[J]. Data analysis and knowledge discovery, 2019, 3(4):63-70.)
[25] TSAI W, GHOSHAL S. Social capital and value creation:the role of intrafirm networks[J]. Academy of management journal, 1998,41(4):464-476.
[26] 孙逍,王硕,肖艳.自愿性企业数据向政府共享的影响路径研究——基于模糊集定性比较分析[J].情报科学, 2024,42(1):115-121, 142.(SUN X, WANG S, XIAO Y. User demand identification and development trend prediction based on RFBERT and UGC[J]. Information science, 2024, 42(1):115-121,142.)
[27] 翟运开,罗波,王宇,等.患者医疗数据共享意愿影响因素——结合改进计划行为理论(TPB)与技术接受模型(TAM)的分析[J].科技管理研究, 2023, 43(16):235-244.(ZHAI Y K, LUO B, WANG Y, et al. Influencing factors of patients’ willingness to share medical data:analysis combining the improved theory of planned behavior(TPB)and technology acceptance model(TAM)[J]. Science and technology management research, 2023, 43(16):235-244.)
[28] 郭宇,张传洋,刘梦婷,等.用户信息焦虑纾解驱动医疗健康大数据价值实现影响因素与路径研究[J].图书情报工作,2023, 67(15):25-34.(GUO Y, ZHANG C Y, LIU M T, et al.Research on influencing factors and paths for the reduction of users’ information anxiety drives the realization of the value of medical and health big data[J]. Library and information service,2023, 67(15):25-34.)
[29] 国家发展改革委,中央网信办,工业和信息化部,等.关于加快构建全国一体化大数据中心协同创新体系的指导意见[EB/OL].[2025-10-04]. https://www.gov.cn/zhengce/zhengceku/2020-12/28/content_5574288.htm. (National development and reform commission, Cyberspace administration of China, Ministry of industry and information technology,et al.Guiding opinions on accelerating the construction of a national integrated big data center collaborative innovation system[EB/OL].[2025-10-04]. https://www.gov.cn/zhengce/zhengceku/2020-12/28/content_5574288.htm.)
[30] 张汉成.健康医疗数据共享的现实困境与合规因应[J].医学与哲学, 2024, 45(17):52-57.(ZHANG H C. Practical dilemmas and compliance responses in healthcare data sharing[J]. Medicine and philosophy, 2024, 45(17):52-57.)
[31] AJZEN I, FISHBEIN M. Attitude-behavior relations:a theoretical analysis and review of empirical research[J]. Psychological bulletin, 1977, 84(5):888-918.
[32] BAUMANN M, WEIL M, PETERS J F, et al. A review of multicriteria decision making approaches for evaluating energy storage systems for grid applications[J]. Renewable and sustainable energy reviews, 2019, 107:516-534.
[33] 付卫东,张杉.国家中小学智慧教育平台学生持续使用意愿影响因素研究——基于我国东中西部7省10674名学生的调查[J].河北大学学报(哲学社会科学版), 2025, 50(4):124-137.(FU W D, ZHANG B. Study on the influencing factors of primary and middle school students’ continuous use intention in national smart education platform:based on a survey of 10, 674students in 7 provinces in eastern, central, and western China[J].Journal of hebei university(philosophy and social science), 2025,50(4):124-137.)
[34] CHIU C M, HSU M H, WANG E. Understanding knowledge sharing in virtual communities:an integration of social capital and social cognitive theories[J]. Decision support systems, 2007,42(3):1872-1888.
[35] WASKO M L, FARAJ S. Why should I share? Examining social capital and knowledge contribution in electronic networks of practice[J]. Mis quarterly, 2005, 29(1):35-57.
[36] 何琳,常颖聪.科研人员数据共享意愿研究[J].图书与情报, 2014(5):125-131.(HE L, CHANG Y C. Research on the willingness of researchers to share scientific data[J]. Library and information, 2014(5):125-131.)
[37] 盛小平,袁圆.国内外科学数据开放共享影响因素研究综述[J].情报理论与实践, 2021, 44(8):173-179+102.(SHENG X P, YUAN Y. A Review of influence factors of open sharing of scientific data at home and abroad[J]. Information studies:theory&application, 2021, 44(8):173-179+102.)
[38] 孟凡生,于建雅.新能源装备智造发展影响因素作用机理研究[J].科研管理, 2019, 40(5):57-70.(MENG F S, YU J Y. A study of the mechanism of action for the influence factors on development of intelligent manufacturing of new energy equipment[J]. Science research management, 2019, 40(5):57-70.)
[39] LANJOUW J O, MODY A. Innovation and the international diffusion of environmentally responsive technology[J]. Research policy, 1996, 25(4):549-571.
[40] WIXOM B H, TODD P A.A theoretical integration of user satisfaction and technology acceptance[J]. Information systems research, 2005, 16(1):85-102.
[41] MCKINNEY V, YOON K, ZAHEDI F M. The measurement of web-customer satisfaction:an expectation and disconfirmation approach[J]. Information systems research, 2002, 13(3):296-315.
文章导航

/

〈 〉