Digital technologies are increasingly being applied in all areas of the patient pathway, both within research and the clinic, throughout healthcare systems across the world. Increasingly, the use of these technologies is focused on direct engagement with patients. The engagement opportunities of tools such as dynamic consent [1], a personalised electronic communication interface which enables people to give and change consent for involvement in research, are being realised in response to research participants' increasing support for greater interaction with research [2, 3].

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]. While this is promising, there has been little exploration of the value of such technologies in patient-facing processes.

The traditional doctor-patient relationship in the Japanese healthcare system has been of a paternalistic nature [7], which means it is not clear whether patients would welcome these initiatives or not. Higuchi conducted a comparison between Japanese and American doctor-patient interactions in the early 1990s and reported that deferring to doctors was consistent with people’s views of autonomy in Japan. In this study many Japanese patients did not accept the self-determined American style of consultation, but preferred to choose to stay uninformed and rely on the judgement of doctors [8]. However, in recent years there has been a gradual shift towards a more participatory patient-doctor model that allows a greater consideration of patient views in decision-making. Slingsby reported increasing active participation in the medical decision-making process, but also within the medical treatment process [9].

Despite this transition, there is still wide spread satisfaction with the traditional Japanese patient-doctor model [10], and a significant behaviour change may be required before digital solutions to support medical and research processes will extend to enable direct interaction with Japanese patients. What is not clear, is whether the bottleneck to enhance patient interaction is due to a lack of interest from participants, lack of provision, for cultural reasons or others. Given these unresolved questions, in instances where researchers are considering opportunities to set up electronic patient registries, it is not yet clear whether the adoption of technology to enable enhanced interaction between participants and the registry would be welcomed by participants, to allow greater control over their involvement in medical care and research. To explore this question, in contribution to the development of a registry for patients with myotonic dystrophy (MD), we have surveyed patients directly, to ascertain their views and attitudes to using an electronic patient registry to communicate with healthcare professionals and researchers.

The main aims of this survey were to gauge patients’ interest in receiving information about medical research and to explore their views on using an electronic patient registry to communicate with healthcare professionals and researchers. The overall findings indicate that the MD patients (and in one case, family members) 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 also discover opportunities to participate in medical research.

The findings from this survey suggest that currently the communication needs of patients, relating to research opportunities and general healthcare information, are not always being met. This is not necessarily unique to MD patients in Japan, as similar findings have been reported with other patient groups in other countries; for example in the UK a national survey conducted by the National Health Service (NHS) found that approximately 53 % of the cancer patients surveyed were given no information about relevant research and would have liked to be more informed about opportunities to participate [12].

The results also indicated that a higher proportion of participants felt they were not able to tell doctors or researchers about issues related to their mental health or lifestyle and household, compared to discussing physical symptoms. Being able to tell doctors or researchers about important issues was also associated with being satisfied with day-to-day communication with their doctor. Interestingly, receiving information was not associated with satisfaction. These results suggest that while this group of patients want information about their condition, they also value the opportunity to be listened to, and thus for a two-way communication channel. Similar findings were reported in a survey conducted in the UK with rare disease patients; only a third of respondents reported feeling like they received sufficient social and psychological support and approximately one quarter felt they receive adequate support with financial concerns related to their condition [13]. A lack of psychological support is of particular concern as there is evidence to suggest an association between suffering with MD and an increased risk of psychological conditions, such as depression and anxiety disorders, which can severely impact quality of life [14].

This suggests that a platform to enable greater levels of communication could be a positive improvement to the existing system, particularly given that several of the survey participants reported to have already used an electronic device to search for health information themselves. One possibility would be to use a digital communication system based on the concept of dynamic consent in which patients are connected with research projects and can access a record of their consent choices relating to the use of their samples and data, which they can change over time, if they wish to. Through such a platform they could also receive information about the research project and how it is progressing [1]. Furthermore, the digital system could pave the new way to facilitate communication of research participation within a family and develop the trust between the family and professionals [3].

The positive response to questions relating to the use of tablets, smartphones and computers to access health-related information, and the demonstration that a large proportion of this patient group are already confident in using technology for this purpose indicates that it is worth exploring this opportunity further. It is also interesting to note that while participants are interested in engaging through digital means, they would want to maintain control over this interaction; the majority of patients indicated they would like to be informed when their data are being shared for research purposes and also to have control over when and how they receive information about opportunities for research participation via email or website updates. This is particularly surprising given how much of a shift it is from the historical viewpoint of uninformed autonomy. Based on these results, it may be appropriate to consider implementing a platform that would enable continued engagement and communication with participants.

Despite the positive responses to using technology in healthcare, patients indicated that privacy was an important factor when using healthcare applications. Interestingly, a study conducted in the US reported that only a minority of patients had concerns over privacy issues in relation to healthcare technology and linked web messaging with clinicians [15]. A systematic literature review that summarised 12 studies conducted in North America and Europe, also reported that privacy did not appear to be a significant concern for patients [16]. However, patients included in the systematic review studies were from the general population, rather than rare disease patients. This, along with cultural differences, may account for the difference in attitudes towards privacy. Traditionally, there are negative implications associated with genetic disorders; inherited conditions were considered to bring shame upon a family [17, 18]. While this attitude has been changing over the past few decades, with more widespread access and acceptance of genetic counsellors, there still remains discrimination and prejudice regarding genetic disorders, such as MD [19, 20]. There are also a number of examples of projects incorporating health data that have been thwarted as a result of privacy concerns relating to data usage. One example is the care.data NHS initiative in the UK, which aimed to extract patients' medical data and share it with a central database using an opt-out system. The poor communication of this initiative has resulted in widespread public and professional concern over the privacy and control that patients have over their medical data [21]. Nonetheless, there is evidence to suggest that even those with higher than average privacy concerns are supportive of electronic platforms to share health data in the right context [22].

The patient views reported in the survey findings are consistent with the idea that there is a shift in Japanese culture and patients want to take more of a participatory role in their healthcare choices [9]. The interest demonstrated by this group may be related to their status as MD patients, and thus be in response to their general interest in learning more about their condition and how it influences their quality of life. Further research with alternative patient groups and healthy populations will be necessary to determine whether this standpoint is reflective of the general public, or specific to this interested group.

Overall, the findings from this survey have demonstrated that many MD patients in Japan may be dissatisfied with the current communication with clinicians and other healthcare professionals and would welcome a digital platform to engage with clinical and research teams and learn more about medical research and opportunities to participate. The significant interest shown in both receiving information, and in making decisions about involvement, use of data and the types of information they receive was of particular interest, given how different this is from the widespread perceptions of Japanese healthcare and the role of patients.

The initial results presented by this survey provide the foundation for a number of new lines of enquiry. Firstly, whether different patient groups report similar experiences and have similar interests in receiving more information. Secondly, whether electronic platforms already being rolled out in other countries could be applied in Japanese clinical and research settings. Finally, further exploration of the sorts of conditions that would need to be applied if data were to be used for research, and contributed electronically, and how much control participants would want on setting these conditions.