Tineke A. Abma

Situated Learning in Communities of Practice Evaluation of Coercion in Psychiatry as a Case

A common model for learning from evaluation assumes that learning occurs when evaluators transmit findings and conclusions to programme participants and stakeholders. Learning is then understood as a cognitive act, happening in the mind of an individual and separated from the rest of our activities. In recent years, this common model has been challenged by scholars who argue for ‘situated learning’ in ‘communities of practice’. This alternative conception emphasizes the context-bound nature of learning (versus learning from material abstracted from context) in relationships between people and implies an intimate connection between knowledge and action. Using as an example an evaluation of a coercion project in Dutch psychiatry, this article illustrates and highlights some of the implications of this conception in terms of the learning that occurs and the roles of the evaluator in developing communities of practice.

Patients as Partners in Responsive Research: Methodological Notions for Collaborations in Mixed Research Teams:

Patients are increasingly actively involved in research. We depart from an approach that understands patient participation as dialogue. This idea is grounded in hermeneutic philosophy and responsive research. Patients are engaged in research via dialogues with other stakeholders. New is the inclusion of patients as research partners. Several methodological notions underpin responsive research. In two health research agenda-setting processes (intellectual disability and kidney disease), these notions have been applied and refined for collaboration with research partners in mixed research teams. The findings demonstrate that equal partnerships include involvement in all research activities from beginning to end, a focus on experiential knowledge, mutual learning, openness, and respect. Mutual learning processes help to overcome stereotypes and handle tensions. Other experiences include the financial reimbursement of research partners, and the necessity of an acceptable workload and scheme. The collaboration might then have a surplus value for the research process and for those involved.

European League Against Rheumatism recommendations for the inclusion of patient representatives in scientific projects

Objective To develop recommendations to enable successful inclusion of the patient perspective in European League Against Rheumatism (EULAR)-funded scientific research projects. Methods The EULAR standardised operational procedures for guideline development were followed. A systematic literature review was presented during a first task force meeting, including 3 rheumatologists, 1 rheumatologist/epidemiologist, 2 allied health professionals, 2 representatives of arthritis research organisations and 7 patient representatives, resulting in 38 statements. A Delphi method was carried out to reduce and refine the statements and agree on a set of eight. Next, a survey among a wider group of experts, professionals and patient representatives (n=42), was completed. Feedback from this wider group was discussed at the second meeting and integrated in the final wording of the recommendations. Subsequently, the level of agreement of the group of experts (n=81) was re-evaluated. Results The project resulted in a definition of patient research partner and agreement on a set of eight recommendations for their involvement in research projects. These recommendations provide practical guidance for organising patient participation, capturing (1) the role of patient research partners, (2) phase of involvement, (3) the recommended number, (4) recruitment, (5) selection, (6) support, (7) training and (8) acknowledgement. Conclusion Collaboration between patients and professionals in research is relatively new. Trials or effectiveness studies are not yet available. Nevertheless, it is possible to define recommendations for the inclusion of patients in research following a solid expert opinion based consensus process.

Patient participation as dialogue: setting research agendas

Background  Collaboration with patients in healthcare and medical research is an emerging development. We aimed to develop a methodology for health research agenda setting processes grounded in the notion of participation as dialogue.

Learning by Telling Storytelling Workshops as an Organizational Learning Intervention

Organizational learning in this article is understood as a collective and relational process in which groups of persons are gaining knowledge and appreciation of issues through stories and an ongoing dialogue between stories. This notion forms the departure-point for the identification and implementation of an organizational learning intervention that aims to facilitate learning through storytelling workshops. The value and meaning of these storytelling workshops are illustrated with a case that deals with the development of palliative care for cancer patients among various health care organizations in an eastern part of the Netherlands. What kinds of stories were added to the existing set of stories, and how the storytelling process and the confrontation with counter stories contributed to the reflection on and reconstruction of canonized stories are described in detail. The article concludes with insights for organizational learning gained from storytelling in palliative care.

Involving patient research partners has a significant impact on outcomes research: a responsive evaluation of the international OMERACT conferences.

Objective To assess the inclusion of patients as international research partners in Outcome Measures in Rheumatology (OMERACT) conferences and how this has influenced the scope and conduct of outcomes research in rheumatology. Design A thematic content analysis of OMERACT internal documents, publications and conference proceedings, followed by a responsive evaluation including 32 qualitative semistructured interviews. Setting The international, biannual research conference OMERACT 10 (Malaysia, 2010). Participants Senior researchers (n=10), junior researchers (n=2), representatives of the pharmaceutical industry and regulators (n=2), conference staff (n=2), new patient delegates (n=8) and experienced patient delegates (n=8). Results The role of patients evolved over 10 years from a single patient focus group to full participation in all areas of the meeting and inclusion in research group meetings between conferences. Five main categories of impact emerged: widening the research agenda; including patient relevant outcomes in core sets; enhancing patient reported instruments; changing the culture of OMERACT and consequences outside OMERACT. Patient participants identified previously neglected outcome domains such as fatigue, sleep disturbances and flares which prompted collaborative working on new programmes of research. Specific benefits and challenges for patients and professionals were identified, such as personal fulfilment, widening of research interests, difficulties in establishing equal partnerships and concerns about loss of research rigour. Conclusions Including patients as partners in OMERACT conferences has widened its focus and adjusted the way of working. It has resulted in new developments in the research agenda and the use of more patient-relevant outcomes in clinical trials. These collaborations have influenced perceptions and beliefs among many patients and researchers, and led to wider patient involvement as partners in research.

Good care in ongoing dialogue. Improving the quality of Care through moral deliberation and responsive evaluation

Recently, moral deliberation within care institutions is gaining more attention in medical ethics. Ongoing dialogues about ethical issues are considered as a vehicle for quality improvement of health care practices. The rise of ethical conversation methods can be understood against the broader development within medical ethics in which interaction and dialogue are seen as alternatives for both theoretical or individual reflection on ethical questions. In other disciplines, intersubjectivity is also seen as a way to handle practical problems, and methodologies have emerged to deal with dynamic processes of practice improvement. An example is responsive evaluation. In this article we investigate the relationship between moral deliberation and responsive evaluation, describe their common basis in dialogical ethics and pragmatic hermeneutics, and explore the relevance of both for improving the quality of care. The synergy between the approaches is illustrated by a case example in which both play a distinct and complementary role. It concerns the implementation of quality criteria for coercion in Dutch psychiatry.

Sharing Stories Narrative and Dialogue in Responsive Nursing Evaluation

Responsive evaluation is an emerging vision and rationale for nursing evaluation. In this vision, evaluation is redefined as an engagement with all stakeholders about the value and meaning of their practice as a vehicle for learning, understanding, and improvement. In this article, the authors aim to illustrate the utility of a particular version of responsive evaluation, one that is connected with recent ideas about narrative and dialogue. They concentrate on methodological issues and use a case example to illustrate these issues. The case concerns a responsive evaluation of the quality of palliative care for cancer patients in a Dutch region. Methodological issues include the collection of stories through the use of conversational interviews. Stories can reveal the meaning and ambiguity of everyday situations. If evaluators listen to different stories and facilitate a dialogue about stories, this will enhance mutual understandings and promote respect, inclusiveness, and social equity.

Participation of marginalized groups in evaluation: Mission impossible?

Responsive evaluation facilitates a dialogical process by creating social conditions that enhance equal input from all stakeholders. However, when multiple stakeholders are involved, some groups tend to go unheard or not be taken seriously. In these cases, empowerment of the more silent voices is needed. The inclusion of marginalized groups in evaluation is thus a challenge for evaluators. It raises questions about how to include all stakeholders in the evaluation process in a way that empowers marginalized stakeholder groups, and at the same time is acceptable for the dominant stakeholder groups. In this article we describe our experiences with a responsive evaluation project on the participation of client councils in policy processes in a Dutch residential care and nursing home organization. We focus on the value of hermeneutic dialogue (fostering mutual understanding and learning processes) in addressing the challenges of working with stakeholders in unequal relationships.

Patients as Partners in a Health Research Agenda Setting: The Feasibility of a Participatory Methodology

This article deals with the participation of patients in setting the agenda of health research that potentially directly affects their lives. The focus is on the communication problems encountered between lay people and medical professionals in developing a joint research agenda. The author argues that a participatory methodology can address these problems and thereby give patients “a say” in the types of health research that have the greatest chance of affecting them personally. The article uses a case example of people with spinal cord injuries participating in research to support the importance and value of patient participation. The case example also helps to rethink appropriate methodologies or at least to modify existing approaches by paying more attention to required social conditions, diversity, and the life world of patients to foster meaningful participation.