Abstract
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.Electronic supplementary materialThe online version of this article (doi:10.1186/s12910-016-0132-2) contains supplementary material, which is available to authorized users.
Highlights
As in other countries, the traditional doctor-patient relationship in the Japanese healthcare system has often been characterised as being of a paternalistic nature
In 2001, Japan launched the ‘e-Japan Priority Policy Program’ strategy, aimed at creating a society where everyone could benefit from IT in various different ways, including through the digitisation of health and medical care [4]. This has been implemented in a number of ways, including electronic medical records (EMR) [5] and the storage of patient data for research [6]
The overall findings indicate that the myotonic dystrophy (MD) patients who participated in this survey were very interested in learning about medical research related to MD and would support the use of an electronic patient registry that they could use to engage with clinicians, find out more about their condition, and discover opportunities to participate in medical research
Summary
The traditional doctor-patient relationship in the Japanese healthcare system has often been characterised as being of a paternalistic nature. The implementation of an online patient engagement platform is being considered by the Myotonic Dystrophy Registry of Japan. In 2001, Japan launched the ‘e-Japan Priority Policy Program’ strategy, aimed at creating a society where everyone could benefit from IT in various different ways, including through the digitisation of health and medical care [4]. This has been implemented in a number of ways, including electronic medical records (EMR) [5] and the storage of patient data for research [6]. There has been little exploration of the value of such technologies in patient-facing processes
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