A Systematic Literature Review of Ethical Challenges Related to Medical and Public Health Data Sharing in China

Abstract

Although stakeholders in China have begun promoting medical and public health data sharing, a large portion of data cannot flow freely across research teams and borders and be converted into “big data.” To identify the ethical challenges that are considered to hinder medical and public health data sharing, we performed a systematic literature review pertaining to medical and health data sharing in China. A total of 2959 unique records were retrieved through the database search, 61 of which were included in the final synthesis after full-text screening. This review provides an overview of the current ethical challenges and barriers involved in data sharing for healthcare purposes in China. Through the systematic review of evidence from peer-reviewed literature and dissertations, we identified barriers and ethical challenges grouped in a taxonomy of capacity building needs, balancing different stakeholders’ interests, scientific and social value, and the data subjects’ rights, public trust and engagement. Best practices and educational implications were suggested based on our findings.

Keywords

data sharing China ethical challenges low- and middle-income countries

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References

Bai

(2010). Research on the construction of regional medical data center based on interconnection [J]. Medical Information, 31(09), 26-28. doi:10.3969/j.issn.1006-1959.2018.09.008

Bull

Cheah

P. Y.

Denny

Jao

Marsh

Merson

, … Parker

., (2015a). Best practices for ethical sharing of individual-level health research data from low-and middle-income settings[J]. Journal of Empirical Research on Human Research Ethics, 10(3), 302-313. https://doi.org/10.1177/1556264615594606

Bull

Roberts

Parker

(2015b). Views of ethical best practices in sharing individual-level data from medical and public health research: A systematic scoping review[J]. Journal of Empirical Research on Human Research Ethics, 10(3), 225-238. https://doi.org/10.1177/1556264615594767

Cao

(2017). Research on the construction of participatory medical model under the background of internet [D]. Chongqing medical Univesity. https://kns.cnki.net/kcms/detail/detail.aspx?dbcode=CMFD&dbname=CMFD201801&filename=1017844659.nh&v=HQiWoKqSXDW%25mmd2B9JtxjNWfMrrCTLCUKypjmqCxiZpzXYiR7CIop%25mmd2F%25mmd2FcfFJGTLmVSTmj.

Chen

Zhang

Liu

Sheng

, (2017). Investigation and research on the universal informed consent and privacy protection of health data sharing in medical institutions [J]. World science and technology - modernization of traditional Chinese medicine, 19(01), 114-119. doi:10.11842/wst.2017.01.017

Cui

(2011). Research and design of heterogeneous data sharing based on medical system [D]. Jilin Univesity. https://kns.cnki.net/kcms/detail/detail.aspx?dbcode=CMFD&dbname=CMFD2011&filename=1011099207.nh&v=SiPXTz9ik7%25mmd2Bl8qewr00Vjf2OVlU%25mmd2FAVlGcVY87dqq4qf3AFc1JtFoVMQ1zTuMuJc1

De Vries

Bull

S. J.

Doumbo

Ibrahim

Mercereau-Puijalon

Kwiatkowski

Parker

, (2011). Ethical issues in human genomics research in developing countries[J]. BMC medical Ethics, 12(1), 5. https://doi.org/10.1186/1472-6939-12-5

De Vries

Pepper

(2012). Genomic sovereignty and the African promise: Mining the African genome for the benefit of Africa[J]. Journal of Medical Ethics, 38(8), 474-478. http://dx.doi.org/10.1136/medethics-2011-100448

Denny

S. G.

Silaigwana

Wassenaar

Bull

Parker

, (2015). Developing ethical practices for public health research data sharing in South Africa: The views and experiences from a diverse sample of research stakeholders[J]. Journal of Empirical Research on Human Research Ethics, 10(3), 290-301. https://doi.org/10.1177/1556264615592386

10.

Eichler

H. G.

Pétavy

Pignatti

Rasi

, (2013). Access to patient-level trial data—a boon to drug developers[J]. New England Journal of Medicine, 369(17), 1577-1579. doi:10.1056/NEJMp1310771

11.

Elo

Kyngäs

(2008). The qualitative content analysis process[J]. Journal of Advanced Nursing, 62(1), 107-115. https://doi.org/10.1111/j.1365-2648.2007.04569.x

12.

Feng

(2016). Chongqing children’s hospital medical information construction inquiry, Master Thesis, Chongqing Univeristy, Chongqing. https://kns.cnki.net/kcms/detail/detail.aspx?dbcode=CMFD&dbname=CMFD201702&filename=1017801972.nh&v=wYkh3NN7qQ37nvjxmtUIISxaxV2m6RWSnMg5QZYsBgxdQ2ALJN5DlRoWu%25mmd2F6iWV63

13.

Gottweis

Gaskell

Starkbaum

(2011). Connecting the public with biobank research: Reciprocity matters[J]. Nature Reviews Genetics, 12(11), 738-739. https://doi.org/10.1038/nrg3083

14.

Guo

X. L.

X. C.

(2018). Discussion and analysis on the development status of internet healthcare in China [J]. Chinese Market, 34 (11), 46-47. doi:10.13939/j.cnki.zgsc.2018.34.046

15.

. (2010). Research on theory and practice of building regional medical information sharing platform [D]. Tianjin medical Univesity. https://kns.cnki.net/kcms/detail/detail.aspx?dbcode=CMFD&dbname=CMFD2011&filename=2010235969.nh&v=AxDzCJ3FxQQ2sPBtAfMVYHXB46Z32RUe3HtzlsX9oPRTCL6DD1zC3K59mS%25mmd2BBz3bz

16.

Y. P.

J.J.

Chen

, (2016). Research and practice on construction of prefecture-level sharing platform for big data of medical health [J]. China Digital Medicine, 11(08), 34-37. doi:10.3969/j.issn.1673-7571.2016.08.011

17.

Deng

(2018). Building biomedical big data is the highest realm of medical sharing [J]. China Business Circle, 3(01), 19-22. doi:CNKI:SUN:JSGZ.0.2018-01-003.

18.

X. P.

Zhang

Z. M.

Dong

J. C.

(2016). Integrated data interconnection and sharing improves medical efficiency and reduces costs – philips cardiovascular continuous health management [J]. China Medical Equipment, 13(11), 161-162. doi:CNKI:SUN:YXQB.0.2016-11-001.

19.

Wang

Xiang

Hui

(2017). Research on regional health data sharing and privacy protection strategy [J]. Science and Technology Innovation and Application, 31, 181-182. doi:CNKI:SUN:CXYY.0.2017-31-106

20.

Huang

(2018). Research on informatization development strategy of X hospital in shishi city [D]. Huaqiao Univesity. https://kns.cnki.net/kcms/detail/detail.aspx?dbcode=CMFD&dbname=CMFD201802&filename=1018718964.nh&v=T%25mmd2BopyvhS27BLVp56Nr9h6KccCds8iJ55k1CZs4qs68AMb7ekalOYmYCCRxPpSuab

21.

Huang

(2016). Integrated data interconnection and sharing to improve medical efficiency and reduce cost: Philips cardiovascular continuous health management [J]. Chinese Journal of Medical Equipment, 13(11), 161-162.

22.

Langat

Pisartchik

Silva

Diego

Silva

Bernard

Olsen

Smith

Sahni

Upshur

, (2011). Is there a duty to share? Ethics of sharing research data in the context of public health emergencies[J]. Public Health Ethics, 4(1), 4-11. doi:10.1093/phe/phr005

23.

(2013). Analysis of health file security and privacy protection in regional medical information sharing [D]. Central south Univesity. https://kns.cnki.net/kcms/detail/detail.aspx?dbcode=CMFD&dbname=CMFD201401&filename=1014141724.nh&v=zhclUlI4WMeXXcQGHqjEzLyQdcpeL%25mmd2BDwMKLayEkttUkfiP9J7XyfCF70tagkC%25mmd2FzI

24.

Jiang

Lan

(2019). Experience and reflection from China's Xiangya medical big data project. Journal of biomedical informatics, 9(3), 103149. https://doi.org/10.1016/j.jbi.2019.103149.

25.

Chao

. (2015). Research on data sharing and exchange technology for regional medical informatization platform [D]. Northwestern Univesity.

26.

(2014). Research on the construction of shaoxing regional health informatization platform [D]. Nanjing Agricultural Univesity. https://kns.cnki.net/kcms/detail/detail.aspx?dbcode=CMFD&dbname=CMFD201602&filename=1016041665.nh&v=BIHlf1AhEJpBg%25mmd2Bbboa6Hn1DbHkiMg352tFtbR8h5kCiSax649ESjg8z5J6yKSgoA

27.

(2016). Research on strategies and demands of information resources sharing in hierarchical medical in Beijing, Master Thesis, Peking Union Medical College Hospital, Beijing. https://kns.cnki.net/kcms/detail/detail.aspx?dbcode=CMFD&dbname=CMFD201701&filename=1016235191.nh&v=jGnhMyvNd0IYkdEX65x0J9MF71RrupldsAlRDBm3ryl5vv%25mmd2FnbAg7aVZ6EKfKpqjl.

28.

Xie

(2017). Discussion on Information Security in “Internet + Medical”. Value Engineering, 9(03), 49–50. doi:10.14018/j.cnki.cn13-1085/n.2017.09.020

29.

(2010). Research on construction of two-way referral health information resource platform between hospital and community health institutions [D]. Huazhong Univesity of science and technology. https://kns.cnki.net/kcms/detail/detail.aspx?dbcode=CMFD&dbname=CMFD2012&filename=1011272488.nh&v=BCxRE8jGvGuVPwdXMyrmM9GyeW7HSsB1%25mmd2B7WIYSN2LgVXwQ22KzgbknI1gO%25mmd2BlNzuD

30.

Zhang

Liu

Hubbard

, (2020). Surveillance of Noncommunicable Disease Epidemic Through the Integrated Noncommunicable Disease Collaborative Management System: Feasibility Pilot Study Conducted in the City of Ningbo, China. Journal of Medical Internet Research, 22(7), e17340. doi:10.2196/17340

31.

X. Y.

Qian

Wang

(2018). Can China lead the development of data trading and sharing markets?[J]. Communications of the ACM, 61(11), 50-51. doi:10.1145/3239542

32.

(2015). Research on the role of government in the construction of medical big data in guangdong province [D]. Guangxi normal Univesity. https://kns.cnki.net/kcms/detail/detail.aspx?dbcode=CMFD&dbname=CMFD201601&filename=1015409325.nh&v=FJvD2jwIvg3cmCVHTwF4vpvyGKJc2o%25mmd2BvAkjQqVCRxtx37jutKZJQigz%25mmd2FFILD8H5U

33.

Liang

X. L.

(2018). Analysis methods of health information in the context of medical big data [J]. Information Technology and Informatization, 06, 87-88 + 91. doi:10.3969/j.issn.1672-9528.2018.06.024

34.

Lin

Huang

Y. L.

(2016). Application research of big data sharing in medical and health field [J]. Information Security and Technology, 7(04), 12-14. doi:CNKI:SUN:AQJS.0.2016-04-005.

35.

Lin

(2017). Research on intelligent medical development in wenzhou [D]. Fujian agriculture and forestry Univesity. https://kns.cnki.net/kcms/detail/detail.aspx?dbcode=CMFD&dbname=CMFD201801&filename=1018043271.nh&v=cubumhEPJcpw3jL9qTSxoSY4l9N73nV1wgbwzoV%25mmd2B3aDYYimxgaPtLaKT0XA4zfWx

36.

Liu

(2017). Comparative analysis of health data platforms at home and abroad in big medical era, Master Thesis, Hei Longjiang Univeristy, Haerbin. https://kns.cnki.net/kcms/detail/detail.aspx?dbcode=CMFD&dbname=CMFD201802&filename=1017157544.nh&v=LZq95xXyTlqrFisbaX838TsYHjecUc65%25mmd2BOuDkR4B3Jttt%25mmd2BPhyOt0SDoCzorEYi%25mmd2Fv

37.

Liu

W. T.

Wang

R. Z.

(2010). Research on the current situation of medical big data construction and its application and development countermeasures [J]. China Development, 18(03), 80-83. doi:10.15885/j.cnki.cn11-4683/z.2018.03.015

38.

Liu

Y. C.

Yang

H. Q.

, (2013). Research on the implementation mechanism of the PLA medical data integration and information sharing platform [J]. China Digital Medicine, 8(06), 30-34. doi:10.3969/j.issn.1673-7571.2013.06.008

39.

(2011). Research on the theory and method of digital regional holistic healthcare reform [D]. Donghua Univesity. https://kns.cnki.net/kcms/detail/detail.aspx?dbcode=CDFD&dbname=CDFD1214&filename=1012294498.nh&v=bFUGyXMGD9JE%25mmd2Fo5OjiIt%25mmd2F646TZpqZZyFzRvaEDKVchBSHOJjUUb2cUvn93Qja7xv

40.

(2016). A comparative study on the sharing of medical big data resources at home and abroad [J]. Information and Data Service, 5(03), 63-67. doi:CNKI:SUN:QBZL.0.2016-03-014

41.

Wang

Cui

, (2019). Defining medical information privacy in China: a quantitative and qualitative study. The Lancet, 394, S96. doi:10.1016/S0140-6736(19)32432-8

42.

(2016). Research on influencing factors of residents’ electronic health file sharing based on stakeholder analysis [D]. Peking union medical college. https://kns.cnki.net/kcms/detail/detail.aspx?dbcode=CMFD&dbname=CMFD201701&filename=1016235177.nh&v=jGnhMyvNd0K%25mmd2BoYMpV2s3f%25mmd2BlhPHrLnvP2irJuXpjRQnQGUr4y9brccfbJDXM9f%25mmd2Fl3

43.

Ning

H. E.

Ru-Wei

H. U.

(2019). Research on the Legal Regulation of the Flow and Sharing of Big Data in Clinical Research. Technology and Law, 7(06), 49-58. doi:10.19685/j.cnki.cn11-2922/n.2019.06.007

44.

Parker

Bull

(2015). Sharing public health research data: Toward the development of ethical data-sharing practice in low-and middle-income settings[J]. Journal of Empirical Research on Human Research Ethics, 10(3), 217-224. https://doi.org/10.1177/1556264615593494

45.

Pearce

Smith

A. H.

(2011). Data sharing: Not as simple as it seems[J]. Environmental Health, 10(1), 1-7. https://doi.org/10.1186/1476-069X-10-107

46.

Peng

Chen

(2011). Region-based health data sharing and exchange platform [J]. Chinese Hospital Director, 6(1), 40-42 + 6. doi:CNKI:SUN:YYYZ.0.2008-01-011

47.

Pisani

AbouZahr

(2010). Sharing health data: Good intentions are not enough[J]. Bulletin of the World Health Organization, 88, 462-466. doi:10.2471/BLT.09.074393

48.

(2017). Data sharing in medical industry as soon as possible [J]. China Leadership Science, 04, 67. doi:CNKI:SUN:KXLD.0.2017-04-031.

49.

Rani

Buckley

B. S.

(2012). Systematic archiving and access to health research data: Rationale, current status and way forward[J]. Bulletin of the World Health Organization, 90, 932-939. doi:10.2471/BLT.12.105908

50.

Sandhaus

Kaufmann

Ramirez-Andreotta

(2018). Public participation, trust and data sharing: Gardens as hubs for citizen science and environmental health literacy efforts[J]. International Journal of Science Education Part B, 1-18.

51.

Strech

Littmann

(2012). Lack of proportionality. Seven specifications of public interest that override post-approval commercial interests on limited access to clinical data[J]. Trials, 13(1), 100. https://doi.org/10.1186/1745-6215-13-100

52.

Van Panhuis

W. G.

Paul

Emerson

Grefenstette

Wilder

Herbst

A. J.

Heymann

Burke

D. S.

, (2014). A systematic review of barriers to data sharing in public health[J]. BMC Public Health, 14(1), 1-9. https://doi.org/10.1186/1471-2458-14-1144

53.

Wang

(2011). Research on internet-based electronic medical record sharing management [D]. Nanjing Univesity of traditional Chinese medicine. https://kns.cnki.net/kcms/detail/detail.aspx?dbcode=CMFD&dbname=CMFD2012&filename=1011221042.nh&v=EGWRiuDTp0bv8c%25mmd2Bzm6ro8dtY0EcXoAIP%25mmd2BZxtLGKHzhhF%25mmd2FhU0F9lZIQAloCNjB3B3

54.

Wang

(2017). Problems and countermeasures in the construction process of medical big data in liaoning province [D]. Shenyang normal Univesity. https://kns.cnki.net/kcms/detail/detail.aspx?dbcode=CMFD&dbname=CMFD201801&filename=1017067956.nh&v=xRS7ZrWalEnugfe2lUQzfkI%25mmd2BhRNy62QIJgx95N4UoIO9UGavsZbzxpouGI21VYvz

55.

Wang

H. S.

Wang

Y. G.

(2016). Research on regional collaborative medical information system and collaborative model based on collaborative theory [J]. China Hospital Management, 29(07), 31-34. doi:CNKI:SUN:YYGL1.0.2016-07-014

56.

Wang

X. Y.

Wang

(2017). Research on regional health and medical data sharing and privacy protection strategies [J]. Science and Technology Innovation and Application, 31(05), 181-182. doi:CNKI:SUN:CXYY.0.2017-31-106.

57.

Wang

Z. C.

(2010). Medical big data and its opportunities and challenges [J]. Information Records Materials, 19(04), 222-223. doi:10.16009/j.cnki.cn13-1295/tq.2010.04.145

58.

(2018). The era of internet and sharing: A new opportunity for medical big data [J]. China Health, 07(12), 48-49. doi:10.15973/j.cnki.cn11-3708/d.2018.07.025

59.

Xia

(2015). Research on the construction of enshi state medical information sharing platform [D]. Central China Normal Univesity. https://kns.cnki.net/kcms/detail/detail.aspx?dbcode=CMFD&dbname=CMFD201601&filename=1015444224.nh&v=pM6qtIw6T63q2Lgdt1H7bIdegZIhqJ0i3qVogNC0%25mmd2BqM%25mmd2FxlDw%25mmd2F7vys4H9CVb4rcjh

60.

Xiang

G. Y.

Zeng

Shen

Y. J.

(2016). Current situation and development trend of intelligent medical construction in China [J]. Chinese General Practice, 19(24), 2998-3000. doi:10.3969/j.issn.1007-9572.2016.24.027

61.

(2017). Research on influencing factors of personal intention to share health information .master’s thesis. Guiyang Guizhou Normal Univesity. https://kns.cnki.net/kcms/detail/detail.aspx?dbcode=CMFD&dbname=CMFD201801&filename=1017828019.nh&v=uGoFAW9Lrrnw7B8O7vhaaVECjxe71NNsPFHsLmT04JKNcDaV%25mmd2BNIzSghn5wGFNsNw

62.

P. H.

Huang

K. S.

(2017). The Status, problems and countermeasures of the Big data of health care in China.[J]. China Digital Medicine, 12(5), 24-26. doi:CNKI:SUN:YISZ.0.2017-05-012.

63.

G. J.

(2020). Research on the current situation of domestic health and medical data open sharing[J]. China Digital Medicine, 15(09), 64-66 + 103. doi:10.3969/j/issn.1673-7571.2020.09.020

64.

(2020). Research on medical data sharing in public hospitals [D]. Zhejiang Univesity of Technology. https://kns.cnki.net/kcms/detail/detail.aspx?dbcode=CMFD&dbname=CMFD202002&filename=1020735114.nh&v=lBEFbURQdQLXdhNVvPo7fwqZpacydTMpqNZdQXX9EW7M7XWlQyiLyyNQyFSQzqYc

65.

Z. X.

Cui

J. M.

(2017). Problems and countermeasures of China’s regional sharing of medical data in the era of big data[J]. Moderen Hospital Management 15(03): 25–27, doi:CNKI:SUN:GLYY.0.2017-03-010.

66.

Yan

C. G.

Shen

G. J.

Sun

C. Y.

(2011). Application of medical data exchange platform in hospital informatization [J]. China Medical Equipment, 26(08), 38-42. doi:10.3969/j/issn.1674-1633.2011.08.012

67.

Yang

J. M.

(2018). Analysis and design of social platform for patient data sharing – research and analysis based on existing online medical platform [J]. Chinese Market, 18, 181-184. doi:10.13939/j.cnki.zgsc.2018.18.181

68.

Yang

K. X.

(2017). Construction of population health information platform based on residents’ health files [D]. Nanjing Univesity of posts and telecommunications. https://kns.cnki.net/kcms/detail/detail.aspx?dbcode=CMFD&dbname=CMFD201801&filename=1017860186.nh&v=hc9NdKdQDEgQLohWG69n71Foa1eDJNx2BCqDyYYBmTS3e%25mmd2B79rUvlXb7aCNzRdSIH

69.

Yang

(2011). Research on the construction of IHE-based medical imaging collaborative network [D]. Southern medical Univesity. https://kns.cnki.net/kcms/detail/detail.aspx?dbcode=CDFD&dbname=CDFD0911&filename=2009194652.nh&v=MURv0WpeXVGgIOrisH591HxXi%25mmd2BWaviPzSMS9drIHudWecPPjCw%25mmd2FAjjjJmdKOyUZk

70.

Yang

J. M.

Wei

, (2020). Analysis of the implementation strategy of regional medical information sharing in Lanzhou. Gansu Science and Technology, 4(18), 19-22. doi:CNKI:SUN:GSKJ.0.2020-18-007

71.

Wang

(2011). Study on whole-process health information data set [D]. Zhejiang Univesity. https://kns.cnki.net/kcms/detail/detail.aspx?dbcode=CMFD&dbname=CMFD2011&filename=1011057768.nh&v=fqxJcvdNLsx5ih4qTd47wSM%25mmd2BSAewwNVY4VJRJXtI8vg7pUl3L7bVWjGoj3o%25mmd2B8Y6A

72.

Yao

(2013). Research on the construction of changzhutan regional medical information platform [D]. Central south Univesity. https://kns.cnki.net/kcms/detail/detail.aspx?dbcode=CMFD&dbname=CMFD201501&filename=1014401571.nh&v=l1FmQOK5TnM%25mmd2B1US52ZEPjGCq2%25mmd2FndD7FUdU%25mmd2BmX8uC6JhTCPzi2AjfsodAsmXVCn77

73.

X. Q.

(2017). Application of medical examination data in college health management [J]. Medical Education Management, 3(S2), 115-118. doi:10.3969/j.issn.2096-045X.2017.S2.035

74.

Yuan

(2016). Research on medical service information sharing model [D]. Heilongjiang Univesity. https://kns.cnki.net/kcms/detail/detail.aspx?dbcode=CMFD&dbname=CMFD201701&filename=1016191615.nh&v=vqRSofXhcEUEBQVDCYZhqzxGAvtc2nW9PvNHjv5F0NC24ebqErAKqn41TQnShROZ

75.

Zhang

(2015). Research on regional medical information sharing system based on big data [D]. South China Univesity of technology.

76.

Zhang

Wang

Zhao

M. H.

Zhan

Q. M.

, (2018). Big data and medical research in China. bmj, 360. doi: https://doi.org/10.1136/bmj.j5910

77.

Zhao

(2011). Research on electronic medical record sharing [D]. Zhengzhou Univesity. https://kns.cnki.net/kcms/detail/detail.aspx?dbcode=CMFD&dbname=CMFD2012&filename=1011215711.nh&v=ipA6AN6%25mmd2BHC8BeJJO7BC7XSr%25mmd2F1pdY8%25mmd2BPTkj0TXNjFxx2R5t95P3%25mmd2BgwILUi%25mmd2F6Vtdzo

78.

Zhou

Araki

Furuhara

, (2011). Research and development of international medical data exchange system [A]. Intelligent Information Technology Application Association V1). [C].Intelligent Information Technology Application Association: Intelligent Information Technology Application Association, 4. 312-315.

79.

Zhou

X. Q.

Luo

Y. L.

(2015). Status quo of medical big data in informatization construction [J]. Journal of Chinese Medical Library and Information, 24(11), 48-51. doi:10.3969/j.issn.1671-3982.2015.11.012

80.

Zhu

T. Y.

(2018). Innovative thoughts on medical informatization construction from the perspective of Big data era[J]. China Strategic Emerging Industry, 32, 225. doi:10.19474/j.cnki.10-1156/f.005848

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