Landscape of Participant-Centric Initiatives for Medical Research in the United States, the United Kingdom, and Japan : Scoping Review

Hamakawa N, Nakano R, Kogetsu A, Coathup V, Kaye J, Yamamoto BA, Kato K, Landscape of Participant-Centric Initiatives for Medical Research in the United States, the United Kingdom, and Japan:Scoping Review, J Med Internet Res 2020;22(8):e16441, DOI: 10.2196/16441, PMID: 32749228, PMCID: 743562

Landscape of Participant-Centric Initiatives for Medical Research in the United States, the United Kingdom, and Japan : Scoping Review

Background: Information and communication technology (ICT) has made remarkable progress in recent years and is being increasingly applied to medical research. This technology has the potential to facilitate the active involvement of research participants. Digital platforms that enable participants to be involved in the research process are called participant-centric initiatives (PCIs). Several PCIs have been reported in the literature, but no scoping reviews have been carried out. Moreover, detailed methods and features to aid in developing a clear definition of PCIs have not been sufficiently elucidated to date. Objective: The objective of this scoping review is to describe the recent trends in, and features of, PCIs across the United States, the United Kingdom, and Japan. Methods: We applied a methodology suggested by Levac et al to conduct this scoping review. We searched electronic databases—MEDLINE (Medical Literature Analysis and Retrieval System Online), Embase (Excerpta Medica Database), CINAHL (Cumulative Index of Nursing and Allied Health Literature), PsycINFO, and Ichushi-Web—and sources of grey literature, as well as internet search engines—Google and Bing. We hand-searched through key journals and reference lists of the relevant articles. Medical research using ICT was eligible for inclusion if there was a description of the active involvement of the participants. Results: Ultimately, 21 PCIs were identified that have implemented practical methods and modes of various communication activities, such as patient forums and use of social media, in the field of medical research. Various methods of decision making that enable participants to become involved in setting the agenda were also evident. Conclusions: This scoping review is the first study to analyze the detailed features of PCIs and how they are being implemented. By clarifying the modes and methods of various forms of communication and decision making with patients, this review contributes to a better understanding of patient-centric involvement, which can be facilitated by PCIs.Hamakawa N, Nakano R, Kogetsu A, Coathup V, Kaye J, Yamamoto BA, Kato K, Landscape of Participant-Centric Initiatives for Medical Research in the United States, the United Kingdom, and Japan:Scoping Review, J Med Internet Res 2020;22(8):e16441, DOI: 10.2196/16441, PMID: 32749228, PMCID: 743562

Moving beyond Technical Issues to Stakeholder Involvement: Key Areas for Consideration in the Development of Human-Centred and Trusted AI in Healthcare

Discussion around the increasing use of AI in healthcare tends to focus on the technical aspects of the technology rather than the socio-technical issues associated with implementation. In this paper, we argue for the development of a sustained societal dialogue between stakeholders around the use of AI in healthcare. We contend that a more human-centred approach to AI implementation in healthcare is needed which is inclusive of the views of a range of stakeholders. We identify four key areas to support stakeholder involvement that would enhance the development, implementation, and evaluation of AI in healthcare leading to greater levels of trust. These are as follows: (1) aligning AI development practices with social values, (2) appropriate and proportionate involvement of stakeholders, (3) understanding the importance of building trust in AI, (4) embedding stakeholder-driven governance to support these activities

Framework and Practical Guidance for the Ethical Use of Electronic Methods for Communication With Participants in Medical Research

Online communication with participants, including online recruitment, electronic informed consent, and data communication, is one of the fields to which information and communication technology (ICT) has been applied in medical research. Online communication provides various benefits, especially for genome research and rare disease research. However, ethical challenges that are derived from or exacerbated by online communication need to be addressed. Here, we present an overview of such ethical issues and provide practical guidance for the ethical implementation of ICT. We specify the ethical issues in the context of using online communication for medical research by an analysis based on the eight ethical principles for clinical research. Informed by this ethical context, we then develop a novel framework for the governance of medical research involving ICT, which consists of eight categories: five research processes (ie, design of research, recruitment, informed consent, data communication, and dissemination and return of results) and three overarching perspectives related to multiple processes of research (ie, access to research and online dialog, community involvement, and independent review). Finally, we present a practical guidance chart for researchers, patient partners, independent reviewers, and funding agencies. We believe that our study will contribute to the ethical implementation of online communication in medical research

Ethical and Social Issues for Health Care Providers in the Intensive Care Unit during the Early Stages of the COVID-19 Pandemic in Japan : a Questionnaire Survey

Seino, Y., Aizawa, Y., Kogetsu, A. et al. Ethical and Social Issues for Health Care Providers in the Intensive Care Unit during the Early Stages of the COVID-19 Pandemic in Japan: a Questionnaire Survey. ABR (2021). https://doi.org/10.1007/s41649-021-00194-y