Using digital technologies to engage with medical research: views of myotonic dystrophy patients in Japan

BMC Medical Ethics

Volumn 17, Issue 1, 2016, Pages

  Coathup, Victoria ^a   Teare, Harriet J A ^a   Minari, Jusaku ^b   Yoshizawa, Go ^b   Kaye, Jane ^a   Takahashi, Masanori P ^b   Kato, Kazuto ^b  

^a UNIVERSITY OF OXFORD   (United Kingdom)

^b OSAKA UNIVERSITY GRADUATE SCHOOL OF MEDICINE   (Japan)

Author keywords

Data sharing; Digital technology; Dynamic consent; Electronic health records; Myotonic dystrophy; Participant centric initiatives; Patient engagement; Patient perspectives; Patient privacy; Patient views

Indexed keywords

ADULT; ATTITUDE; CROSS-SECTIONAL STUDY; DOCTOR PATIENT RELATION; FEMALE; HUMAN; INFORMATION SEEKING; INTERNET; INTERPERSONAL COMMUNICATION; JAPAN; MALE; MEDICAL RESEARCH; MIDDLE AGED; MYOTONIC DYSTROPHY; QUESTIONNAIRE; YOUNG ADULT;

ADULT; ATTITUDE; BIOMEDICAL RESEARCH; COMMUNICATION; CROSS-SECTIONAL STUDIES; FEMALE; HUMANS; INFORMATION SEEKING BEHAVIOR; INTERNET; JAPAN; MALE; MIDDLE AGED; MYOTONIC DYSTROPHY; PHYSICIAN-PATIENT RELATIONS; SURVEYS AND QUESTIONNAIRES; YOUNG ADULT;

EID: 84983372602     PISSN: None     EISSN: 14726939     Source Type: Journal    
DOI: 10.1186/s12910-016-0132-2     Document Type: Article

References (23)

1. Kaye J, Whitley EA, Lund D, Morrison M, Teare H, Melham K. Dynamic consent: a patient interface for twenty-first century research networks. Eur J Hum Genet. 2014;23(2):141-6. Nature Publishing Group.
2. Teare HJA, Morrison M, Whitley EA, Kaye J. Towards "Engagement 2.0": Insights from a study of dynamic consent with biobank participants. Digit Heal. 2015;0(0):1-13.
3. Minari J, Teare H, Mitchell C, Kaye J, Kato K. The emerging need for family-centric initiatives for obtaining consent in personal genome research. Genome Med. 2014;6(12):118.
4. Obi T, Ishmatova D, Iwasaki N. Promoting ICT innovations for the ageing population in Japan. Int J Med Inform. 2012;82(4):e47-62. Elsevier Ireland Ltd.
5. Matsumura Y, Hattori A, Manabe S, Takeda T, Takahashi D, Yamamoto Y, et al. Interconnection of electronic medical record with clinical data management system by CDISC ODM. Stud Health Technol Inform. 2014;205:868-72.
6. Yamaguchi T. New Solutions Using ICT in Clinical Trials and Clinical Research. Fujitsu Sci & Tech J. 2015;51(3):18-25.
7. Elleuch A. Patient satisfaction in Japan. Int J Health Care Qual Assur. 2008;21(7):692-705. England.
8. Higuchi N. The patient's right to know of a cancer diagnosis: a comparison of Japanese paternalism and American self-determination. Washburn Law J. 1992;31(3):455-73. United States.
9. Slingsby BT. Decision-making models in Japanese psychiatry: Transitions from passive to active patterns. Soc Sci Med. 2004;59:83-91.
10. Watanabe Y, Takahashi M, Kai I. Japanese cancer patient participation in and satisfaction with treatment-related decision-making: A qualitative study. BMC Public Health. 2008;8:77.
11. StataCorp. Stata statistical software: release 14. 2015th ed. College Station: StataCorp LP; 2015.
12. Department of Health. National Cancer Patient Experience Survey 2011/2012 - National Report. London, UK: Department of Health; 2012.
13. Limb L, Nutt S, Sen A. Experiences of rare diseases: An insight from patients and families. 2010.
14. Antonini G, Soscia F, Giubilei F, De Carolis A, Gragnani F, Morino S, et al. Health-related quality of life in myotonic dystrophy type 1 and its relationship with cognitive and emotional functioning. J Rehabil Med. 2006;38(3):181-5.
15. Hassol A, Walker JM, Kidder D, Rokita K, Young D, Pierdon S, et al. Patient experiences and attitudes about access to a patient electronic health care record and linked web messaging. J Am Med Inform Assoc. 2004;11(6):505-13.
16. Akesson KM, Saveman B-I, Nilsson G. Health care consumers' experiences of information communication technology - a summary of literature. Int J Med Inform. 2007;76(9):633-45.
17. Matsui K. Socio-political discourses on genetic privacy in Japan. In: Kaan TS, Ho CW, editors. Genetic privacy: an evaluation of the ethical and legal landscape. London: World Scientific Publishing Co.; 2013. p. 93-124.
18. Kawashima H. Different client's response at genetic clinics in Japan and the USA, and its ethical background. Proceedings of the Second International Bioethics Seminar in Fukui, 20-21 March, 1992. Human Genome Research and Society; 1993. p. 145-6.
19. Macer DRJ. Genetic information and the family in Japan, in Cooper, D. (ed.). Encyclopedia of the Human Genome. Michigan, USA: Nature Publishing Group; 2003. p. 855-59.
20. Takayata K, Yokota K, Ogihara T. Current status of genetic counseling in Yamanashi Prefecture. Yamanashi Nurs J. 2005;4:35-40.
21. Carter P, Laurie GT, Dixon-Woods M. The social licence for research: why care.data ran into trouble. J Med Ethics. 2015;41(5):404-9.
22. Angst CM, Agarwal R. Adoption of electronic health records in the presence of privacy concerns: The elaboration likelihood model and individual persuasion. MIS Q. 2009;33(2):339-70.
23. Makimoto K, Iida Y, Hayashi M, Takasaki F. Bias by neuroblastoma postal screening participation Japan status and social desirability in an anonymous survey, population-based postal survey of parents in Ishikawa, Japan. J Epidemiol. 2001;11(2):70-3.