title: Using digital technologies to engage with medical research: views of myotonic dystrophy patients in Japan.
abstract: As 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.
  
  
  
  We 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.
  
  
  
  A 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.
  
  
  
  Overall, 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.
authors.affiliation: Centre for Health, Law and Emerging Technology, Nuffield Department of Population Health, University of Oxford, Ewert House, Banbury Road, Oxford, OX2 7DD, UK.
authors.forename: Victoria
authors.initials: V
authors.lastname: Coathup
authors.affiliation: Centre for Health, Law and Emerging Technology, Nuffield Department of Population Health, University of Oxford, Ewert House, Banbury Road, Oxford, OX2 7DD, UK.
authors.forename: Harriet J A
authors.initials: HJ
authors.lastname: Teare
authors.affiliation: Department of Biomedical Ethics and Public Policy, Graduate School of Medicine, Osaka University, 2-2 Yamadaoka, Suita, 565-0871, Osaka, Japan.
authors.forename: Jusaku
authors.initials: J
authors.lastname: Minari
authors.affiliation: Department of Biomedical Ethics and Public Policy, Graduate School of Medicine, Osaka University, 2-2 Yamadaoka, Suita, 565-0871, Osaka, Japan.
authors.forename: Go
authors.initials: G
authors.lastname: Yoshizawa
authors.affiliation: Centre for Health, Law and Emerging Technology, Nuffield Department of Population Health, University of Oxford, Ewert House, Banbury Road, Oxford, OX2 7DD, UK.
authors.forename: Jane
authors.initials: J
authors.lastname: Kaye
authors.affiliation: Department of Neurology and Functional Diagnostics Graduate School of Medicine, Osaka University, D-4, 2-2 Yamadaoka, Suita, 565-0871, Osaka, Japan. mtakahas@neurol.med.osaka-u.ac.jp.
authors.forename: Masanori P
authors.initials: MP
authors.lastname: Takahashi
authors.affiliation: Department of Biomedical Ethics and Public Policy, Graduate School of Medicine, Osaka University, 2-2 Yamadaoka, Suita, 565-0871, Osaka, Japan. kato@eth.med.osaka-u.ac.jp.
authors.forename: Kazuto
authors.initials: K
authors.lastname: Kato
mesh_terms: D000328:Adult; D001290:Attitude; D035843:Biomedical Research; D003142:Communication; D003430:Cross-Sectional Studies; D005260:Female; D006801:Humans; D057226:Information Seeking Behavior; D020407:Internet; D007564:Japan; D008297:Male; D008875:Middle Aged; D009223:Myotonic Dystrophy; D010817:Physician-Patient Relations; D011795:Surveys and Questionnaires; D055815:Young Adult
keywords: Data sharing; Digital technology; Dynamic consent; Electronic health records; Myotonic dystrophy; Participant centric initiatives; Patient engagement; Patient perspectives; Patient privacy; Patient views