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

BMC Medical Ethics

Research Article

Victoria Coathup¹  Harriet J. A. Teare¹  Jane Kaye¹  Jusaku Minari²  Go Yoshizawa²  Kazuto Kato²  Masanori P. Takahashi³ 

[1] Centre for Health, Law and Emerging Technology, Nuffield Department of Population Health, University of Oxford, Ewert House, Banbury Road, OX2 7DD, Oxford, UK;Department of Biomedical Ethics and Public Policy, Graduate School of Medicine, Osaka University, 2-2 Yamadaoka, 565-0871, Suita, Osaka, Japan;Department of Neurology and Functional Diagnostics Graduate School of Medicine, Osaka University, D-4, 2-2 Yamadaoka, 565-0871, Suita, Osaka, Japan;

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

DOI  :  10.1186/s12910-016-0132-2

 received in 2015-12-17, accepted in 2016-08-06,  发布年份 2016

来源: Springer

【 摘 要 】

BackgroundAs in other countries, the traditional doctor-patient relationship in the Japanese healthcare system has often been characterised as being of a paternalistic nature. However, in recent years there has been a gradual shift towards a more participatory-patient model in Japan. With advances in technology, the possibility to use digital technologies to improve patient interactions is growing and is in line with changing attitudes in the medical profession and society within Japan and elsewhere. The implementation of an online patient engagement platform is being considered by the Myotonic Dystrophy Registry of Japan. The aim of this exploratory study was to understand patients’ views and attitudes to using digital tools in patient registries and engagement with medical research in Japan, prior to implementation of the digital platform.MethodsWe conducted an exploratory, cross-sectional, self-completed questionnaire with a sample of myotonic dystrophy (MD) patients attending an Open Day at Osaka University, Japan. Patients were eligible for inclusion if they were 18 years or older, and were diagnosed with MD.ResultsA total of 68 patients and family members attended the Open Day and were invited to participate in the survey. Of those, 59 % submitted a completed questionnaire (n = 40). The survey showed that the majority of patients felt that they were not receiving the information they wanted from their clinicians, which included recent medical research findings and opportunities to participate in clinical trials, and 88 % of patients indicated they would be willing to engage with digital technologies to receive relevant medical information. Patients also expressed an interest in having control over when and how they received this information, as well as being informed of how their data is used and shared with other researchers.ConclusionOverall, the findings from this study suggest that there is scope to develop a digital platform to engage with patients so that they can receive information about medical care and research opportunities. While this study group is a small, self-selecting population, who suffer from a particular condition, the results suggest that there are interested populations within Japan that would appreciate enhanced communication and interaction with healthcare teams.

【 授权许可】

CC BY   
© The Author(s). 2016