The Primary Immunodeficiency Database in Japan

The Primary Immunodeficiency Database in Japan (PIDJ) is a registry of primary immunodeficiency diseases (PIDs) that was established in 2007. The database is a joint research project with research groups associated with the Ministry of Health, Labor and Welfare; the RIKEN Research Center for Allergy and Immunology (RCAI); and the Kazusa DNA Research Institute (KDRI). The PIDJ contains patient details, including the age, sex, clinical and laboratory findings, types of infections, genetic analysis results, and treatments administered. In addition, web-based case consultation is also provided. The PIDJ serves as a database for patients with PIDs and as a patient consultation service connecting general physicians with PID specialists and specialized hospitals. Thus, the database contributes to investigations related to disease pathogenesis and the early diagnosis and treatment of patients with PIDs. In the 9 years since the launch of PIDJ, 4,481 patients have been enrolled, of whom 64% have been subjected to genetic analysis. In 2017, the Japanese Society for Immunodeficiency and Autoinflammatory Diseases (JSIAD) was established to advance the diagnosis, treatment, and research in the field of PIDs and autoinflammatory diseases (AIDs). JSIAD promotes the analysis of the pathogenesis of PIDs and AIDs, enabling improved patient care and networking via the expansion of the database and construction of a biobank obtained from the PIDJ. The PIDJ was upgraded to “PIDJ ver.2” in 2019 by JSIAD. Currently, PIDJ ver.2 is used as a platform for epidemiological studies, genetic analysis, and pathogenesis evaluation for PIDs and AIDs.

CONCLUSIONS OF THE EXPERIENCED PERSONS

The category of “knowledgeable (experienced) persons” is not limited to experts only. Arbitration assessors and specialists are also referred to as knowledgeable persons; some scholars believe that a witness and even a judge can perform the functions of a knowledgeable person. The article focuses on the figure of a specialist, his consultations and responses to court inquiries. There is a lack of unification of the norms on the participation of a specialist in the Civil Procedure Code and the Arbitration Procedure Code of the Russian Federation. The effectiveness of seeking advice from a specialist is substantiated – this is a faster and less costly way of obtaining special knowledge necessary for considering a case. Consultation and examination are mutually complementary, the consultation may precede the examination, or, on the contrary, follow after the completion of the examination of the expert opinion, when questions have arisen to such a conclusion and the problem is solved with the appointment of additional or repeated examinations. The consultations are varied and subject to classification. It is substantiated, based on the differences in the nature of the consultations, that the consultation of a specialist on the use of technical means in the study of evidence cannot be compared with the consultation of a specialist on a complex scientific issue. As a classification criterion, the author proposes to consider the need for research and assessment of consultation, or the lack thereof. In the latter case, there is technical assistance and it would be legitimate not to classify it as evidence. However, research and assessment of the information presented is an attribute of working with evidence, therefore, in such cases, the status of evidence should be recognized for consultation.

Design and implementation of the child and adolescent psychoanalytic psychotherapy training programme by the International Psychotherapy Institute for Jiandanxinli

The author describes how her interest in China and Chinese families led her to direct an online two-year programme for training Chinese therapists in child and adolescent psychoanalytic psychotherapy. She sets her work in its social and professional context. She outlines the design and discusses modification in teaching technique to suit this educational setting, in which time must be allowed for translation from English to Chinese, and from conscious to unconscious. She illustrates a clinical case consultation group to show the group mind at work, and concludes with oral and written evaluation from participants.

Little Streamer: learning the unconscious symbolism of computer jargon

A Chinese student of psychoanalytic child therapy, Hu Fangjia (HF), presented to a small clinical case consultation group an obsessional thirteen-year-old boy who spoke of nothing but equipment for streaming video games. A Western small group consultant, Jill Savege Scharff (JSS), encouraged the bored group to consider the unconscious symbolism in the boy’s obsessive communication in order to sustain interest in understanding his experience of loss and neglect as the eldest living boy in his family.

Making implementation programmes better. Mixed-m​ethods case study of an implementation process for two evidence-based brief psychotherapies

Background The Ostrobothnia Depression Programme (ODP) had a hybrid-design incorporating an implementation programme for two evidence-based treatments (EBTs), behavioural activation and motivational interviewing, and a study on their effectiveness. It was carried out regionally in secondary psychiatric care in a Finnish district. We evaluated the ODP through a mixed-methods analysis to extract organization- and programme-related knowledge to make future programmes more effective in terms of sustaining and scaling up the desired programme outcomes. Methods A cross-sectional mixed-methods survey was conducted with the programme addressees 4-5 months after the end of the ODP. The realization of case consultation groups analysed further by interviewing those responsible for them and making use of attendance lists. Results Out of 72 original programme addressees 33 completed the survey. The results showed that the ODP succeeded in initiating the desired change in clinical practices. Case consultations and training videos intended as reinforcers were underutilized. Deficits in the implementation plan and the hybrid design of the ODP jeopardized the maintenance of the implementation outcomes in the long term. Conclusions We discuss our results in light of the Normalization Process Theory (NPT) related sub-processes ‘implementation’, ‘embedding’ and ‘integration’. The complete training intervention in the target EBTs should comprise both workshops and non-optional case consultations. Access to case consultations should be made as convenient as possible. Means to decentralize the clinical support in everyday work should be elaborated in collaboration with the teams. Coaching team leaders to employ evidence-based active managerial practices that are connected e.g. to the concept of ‘transformational leadership’ would likely be fruitful. The original programme plan should be checked for means to sustain and scale up the implementation outcomes after the active programme phase.

Clinical ethics committees in nursing homes: what good can they do? Analysis of a single case consultation

Background: Ought nursing homes to establish clinical ethics committees (CECs)? An answer to this question must begin with an understanding of how a clinical ethics committee might be beneficial in a nursing home context – to patients, next of kin, professionals, managers, and the institution. With the present article, we aim to contribute to such an understanding. Aim: We ask, in which ways can clinical ethics committees be helpful to stakeholders in a nursing home context? We describe in depth a clinical ethics committee case consultation deemed successful by stakeholders, then reflect on how it was helpful. Research design: Case study using the clinical ethics committee’s written case report and self-evaluation form, and two research interviews, as data. Participants and research context: The nursing home’s ward manager and the patient’s son participated in research interviews. Ethical considerations: Data were collected as part of an implementation study. Clinical ethics committee members and interviewed stakeholders consented to study participation, and also gave specific approval for the publication of the present article. Findings/results: Six different roles played by the clinical ethics committee in the case consultation are described: analyst, advisor, support, moderator, builder of consensus and trust, and disseminator. Discussion: The case study indicates that clinical ethics committees might sometimes be of help to stakeholders in moral challenges in nursing homes. Conclusions: Demanding moral challenges arise in the nursing home setting. More research is needed to examine whether clinical ethics committees might be suitable as ethics support structures in nursing homes and community care.

Framework for evaluation research on clinical ethical case interventions: the role of ethics consultants

Evaluation of clinical ethical case consultations has been discussed as an important research task in recent decades. A rigid framework of evaluation is essential to improve quality of consultations and, thus, quality of patient care. Different approaches to evaluate those services appropriately and to determine adequate empirical endpoints have been proposed. A key challenge is to provide an answer to the question as to which empirical endpoints—and for what reasons—should be considered when evaluating the quality of a service. In this paper, we argue for an approach that adopts the role of ethics consultants as its point of departure. In a first step, we describe empirical and ethical characteristics of evaluating clinical ethical case. We show that the mode of action and the explicit normative character of the interventions constitute two characteristics which pose challenges to the selection of appropriate quality criteria and require special attention. In a second step, we outline the way in which an analysis of the role of ethics consultants in the context of a clinical ethical case consultation services can account for the existing challenges by linking empirically measurable endpoints with normative theory. Finally, we discuss practical implications of our model for evaluation research.

The practice of balancing in clinical ethics case consultation

Models for clinical ethics case consultation often make reference to ‘balancing’ or ‘weighing’ moral considerations, without further detail. In this paper, we investigate balancing in clinical ethics case consultation. We suggest that, while clinical ethics services cannot resolve ongoing deep philosophical debates about the nature of ethical reasoning, clinical ethicists can and should be more systematic and transparent when balancing considerations in case consultations. We conceptualise balancing on a spectrum from intuitive to deliberative, and argue that good balancing in case consultation involves articulating reasons for giving something more or less weight. We develop a framework of four practical strategies for better balancing in clinical ethics case consultation: intuitions as a launchpad, drilling down, pairwise comparison and group deliberation.