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Collective participation of patients in health and medical research is an emerging trend. The literature falls, however, short on process descriptions focusing on the power dynamics when sharing power with patients in the research process. This article therefore aims to generate knowledge on how to involve patients and redress power imbalances in health research agenda setting. The context for the study was health research agenda setting on Parkinson's Disease in The Netherlands. The dialogue model was used: a multistakeholder and multiphased process for the coproduction of research agenda. Patients with Parkinson were involved in all stages of the agenda setting. It appeared to be crucial for people with Parkinson to create a free, protective, and communicative space of mutual encouragement to develop power from within and to articulate their voice. This prepared them for meaningful deliberations with health-care professionals, researchers, and funding agencies. Ultimately, these deliberations resulted in a relevant and useful research agenda that better enable health-care services to meet the needs and expectations of patients.

Het essay van Harrie Jansen schetst een ontwikkeling van het kwalitatieve onderzoek waarin ik me kan vinden. De ontstane polarisatie tussen kwalitatief en kwantitatief onderzoek is niet vruchtbaar. Als kwalitatieve onderzoekers hebben we ons vaak afgezet tegen kwantitatief georiënteerde onderzoekers in een poging om onze werkwijze te verduidelijken. We hebben collega-onderzoekers daarmee soms van ons afgedreven. Ze herkenden zich niet in onze weergave van hun onderzoek. Wegen voor samenwerking werden zo afgesloten. Gevolg was ook dat we het kwalitatieve onderzoek teveel op een hoop gooiden, waardoor we het zicht op de verschillende richtingen en varianten binnen het kwalitatieve onderzoek kwijtraakten.

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.

Metafoor tussen methode en magie is een proefschrift van Heidi Muijen over creatieve trajecten en werkvormen in de geestelijke gezondheidszorg en het organisatiewezen. Aanleiding vormde de opkomst van creativiteit en creatieve werkvormen in beide sectoren. In de geestelijke gezondheidszorg weerspiegelt deze ontwikkeling zich in het werken met beeldende vormgeving, muziek en dans. Creatieve therapie staat echter steeds meer onder druk nu bedrijfsmatige concepten hun intrede doen in de gezondheidszorg en efficiency en effectiviteit dominante parameters zijn geworden. In de wereld van de management- en organisatieconsultancy winnen creatieve trainingen terrein, in de vorm van bijvoorbeeld survivaltochten en de 'techniek' van het metaforisch herkaderen van (organisatie)problemen. En ook op het terrein van coaching en advies is het niet langer ongebruikelijk om met beeldende middelen te werken.

Today many disciplines including organization and management, public administration, social psychology, educational research and political science are becoming interested in dialogue. Evaluators are only just beginning to recognize how valuable dialogue can be for their work. Dialogue may have the potential to improve the democratic quality of decision making and judgement in postmodern societies and enhance (mutual) understanding between people. In this special issue we aim to disentangle some of the complexities, meanings and aims of dialogue and dialogical evaluation. A number of evaluation scholars and practitioners will discuss different notions of the concept and its relevance for evaluation practice. They will also deal with some practical considerations: what are the essential characteristics of evaluation dialogue; who should participate and what should the role and responsibility of evaluators be. We will also identify areas where we think caution should be exercised. Examples of dialogical evaluation projects in various policy settings and countries – including Sweden, Holland and the USA – together with comments by other scholars are meant to stimulate an exchange of ideas.

This article outlines a reflexive, dialogical approach to evaluation in which lived experiences, meanings and underlying values become the subject of reflexive dialogues among as many interested people as possible in order to heighten their understanding. Dialogue is considered as an open, divergent conversation. In contrast to a persuasive dialogue, this type of dialogue builds on reflection, the willingness to pause in a conversation, to spend time and to explore more deeply what seems to be essential to the participants themselves. Narrative (versus argumentative) rationality informs this kind of dialogue. A case example illustrates the approach. It concerns a formative evaluation of an injury-prevention programme in two performing-arts schools. The case shows how art students in particular experience the pressures of performance. Getting students, teachers and (para) medical experts to engage in reading stories of each other's experience also raises issues pertinent not only to their personal and mutual understanding but also to the culture of the institution.

Written texts are an important medium for evaluators to communicate their findings. Evaluation reports take many forms and functions, commonly having the character of a scientific text. An objective and factual description informs readers about the activities and outcomes of the program and its underlying mechanisms. In this article I suggest that a scientific text can be useful when an evaluation aims to determine the worth of a program. However, if the goal of evaluation is to promote a dialogue among those who have an interest in the evaluated program a different kind of text is required. In my attempt to identify an appropriate text for such a purpose I describe and apply the notions of texts developed by postmodern writers—self-reflexivity, polyvocality and multiplicity—in an evaluative context. The potential of this kind of text is illustrated and critically examined by the responsive evaluation of a Palliative Care project.

We are living in a postmodern society characterized by a permanent and irreducible plurality. This has serious implications for the practices of social planning and evaluation. This has not always been fully recognized. The dominant discourse in evaluation is modernist in its ambition to rationalize society by the instrumental use of objective, scientific knowledge. This coincides well with centralized, top-down social planning based on analysis and instruction by experts. Although dominant approaches have been criticized for their technocratic orientation, proposed alternatives are incompatible with a decentralized, bottom-up and interactive planning that takes a diversity of perspectives into account. The case of social revitalization in Rotterdam illustrates that a responsive evaluation approach can succesfully support attempts of entrepreneurial, local governments that invite and involve public, private and voluntary stakeholders to revitalize their realities and relationships.

Cover -- Series page -- Evaluation for a Caring Society -- Library of Congress Cataloging-in-Publication Data -- Contents -- Foreword (Schwandt) -- Foreword (Widdershoven) -- Acknowledgments -- Introduction -- The Photo-story of the Carefreestate -- I am Zaitone -- PART I: THEORETICAL REFLECTIONS ON A CARING SOCIETY -- CHAPTER 1: Care, Competency, and Knowledge -- CHAPTER 2: The Art of Understanding -- PART II: DEMOCRATIC EVALUATION FOR A CARING SOCIETY -- CHAPTER 3: Democratic Evaluation and Care Ethics -- CHAPTER 4: Democratic Caring Evaluation for Refugee Children in Sweden -- PART III: ETHICS AND EVALUATION FOR A CARING SOCIETY -- CHAPTER 5: Uncontrolled Evaluation -- CHAPTER 6: Evaluation for Moving Ethics in Health Care Services Towards Democratic Care -- PART IV: RESPONSIVE EVALUATION FOR A CARING SOCIETY -- CHAPTER 7: Responding to Otherness -- CHAPTER 8: Dialogue, Difference, and Care in Responsive Enactments of a World-Becoming -- CHAPTER 9: Responsive Evaluation as a Way to Create Space for Sexual Diversity -- CHAPTER 10: Evaluation for a Caring Society -- ABOUT THE CONTRIBUTORS

BACKGROUND: Citizen science and models for public participation in health research share normative ideals of participation, inclusion, and public and patient engagement. Academic researchers collaborate in research with members of the public involved in an issue, maximizing all involved assets, competencies, and knowledge. In citizen science new ethical issues arise, such as who decides, who participates, who is excluded, what it means to share power equally, or whose knowledge counts. This article aims to present an ethics framework that offers a lens of understanding and heuristic guidelines to deal with ethical issues in citizen science. METHODS: We conducted seven case studies between 2015 and 2021 to attune and validate the ethics framework for the context of citizen science. The cases related to studies with older adults, people with a psychiatric vulnerability, people dependent on community care, people who are unemployed or living in poverty or both, and young adults with respiratory disease. RESULTS: Ethics in citizen science reaches beyond the ethical issues in traditional biomedical and health research. It entails more than following procedures about informed consent and privacy and submitting a proposal to a Medical Research Ethics Committee. Ethics in citizen science relates to everyday ethical issues during the study, including relational and moral complexities concerning collaboration, sharing power, and democratic decision-making. Dealing with these issues requires ethics work of researchers. This entails seeing ethically salient issues and reflecting on everyday ethical issues. Ethics work consists of seven features: framing work, role work, emotion work, identity work, reason work, relationship work, and performance work. All are relevant for researchers in citizen science. CONCLUSIONS: Ethical issues in citizen science often relate to power differentials, partnership, and collaboration between academics and non-academics. The ethics framework prepares researchers for the work needed in citizen ...

Empowerment von Menschen, die unter prekären Bedingungen leben, ist eine zentrale Prämisse partizipativer Gesundheitsforschung (PGF). Empowerment, die Selbstermächtigung einer Person innerhalb ihrer sozialen Umgebung, hat eine persönliche, eine relationale und eine politische Komponente. Die hier berichtete Studie wurde mit Müttern durchgeführt, die unter prekären Bedingungen in den Niederlanden leben. Wir beschreiben in diesem Beitrag, wie Empowerment im Projekt gefördert werden konnte 1. im Rahmen der Agenda (Eigentumsrechte) und 2. durch die Anerkennung sowohl der Selbstartikulation als auch der geteilten Darstellung der Teilnehmerinnen über ihre eigenen Belange (epistemische Gerechtigkeit). Ein Ergebnis unsere Studie ist, dass insbesondere die Bemühung um relationales und politisches Empowerment sehr herausfordernd sein können: Relationale Spannungen in der Gruppe beeinträchtigten unsere Arbeit, und die Reflexion struktureller Ursachen für die missliche Lage der Mütter benötigte Zeit und relationale Sensitivität. Hier konzentrierten wir uns als Forschende insbesondere auf ethische Fragen und versuchten, mit kreativen Außenstehenden zusammenzuarbeiten, um der Disharmonie in der Gruppe entgegenzuwirken. Relationales und politisches Empowerment ist im Rahmen von PGF ein langfristiges Unterfangen und birgt einige Stolpersteine im Forschungsprozess. ; Empowerment of people in challenging circumstances is a central premise of participatory health research (PHR). Empowerment, a process of strengthening vis-à-vis one's social environment, has three components: personal, relational, and political. The current PHR study was conducted with mothers living in unfortunate situations in the Netherlands. In this article, we describe how PHR fostered personal empowerment to a certain degree by 1. setting an agenda for the project (ownership), and 2. listening to and acknowledging the articulation of the participants' own story and a collective story about their issues (epistemic justice). One result of the study is that ...

Empowerment of people in challenging circumstances is a central premise of participatory health research (PHR). Empowerment, a process of strengthening vis-à-vis one's social environment, has three components: personal, relational, and political. The current PHR study was conducted with mothers living in unfortunate situations in the Netherlands. In this article, we describe how PHR fostered personal empowerment to a certain degree by 1. setting an agenda for the project (ownership), and 2. listening to and acknowledging the articulation of the participants' own story and a collective story about their issues (epistemic justice). One result of the study is that achieving relational and political empowerment can be challenging. Relational tensions in the group distracted us. Conducting critical reflection on more structural causes of the unfortunate situations of the mothers is a process that needs time and calls for relational sensitivity and inclusion. The participatory researcher as facilitator focused on ethics and tried to collaborate with creative outsiders to change the disharmony in the group. Reaching relational and political empowerment is a long-term process in PHR, but not without stumbling blocks on the journey.