Joske Bunders

Patients' priorities concerning health research: The case of asthma and COPD research in The Netherlands

Background  Although patients are increasingly involved in agenda setting within specific fields of health research, they rarely participate in decision‐making on the entire breadth of health research, including biomedical research. This might be attributable to a widely held view that patients are incapable of adequate research prioritization due to a lack of relevant knowledge, a failure to look beyond their own individual problems or an inability to objectively consider long‐term targets.

Transdisciplinarity: The New Challenge for Biomedical Research:

During the past decade, patient participation became an important issue in the medical field, and patient participation in biomedical research processes is increasingly called for. One of the arguments for this refers to the specific kind of knowledge, called experiential knowledge, patients could contribute. Until now, participation of patients in biomedical research has been rare, and integration of patients’ experiential knowledge with scientific knowledge—in the few cases it takes place—occurs implicitly and on an ad hoc basis. This is illustrated by describing and analyzing the activities of the German patient group on retinitis pigmentosa. The authors argue that to be able to optimize the use of experiential knowledge of patients in biomedical research, a systematic approach is required. Transdisciplinary research provides such an approach, systematically, explicitly, and deliberately integrating knowledge from different scientific and nonscientific sources. In this article, the concept of transdisciplinarity is elaborated upon. The authors propose a possible procedure, identify necessary conditions and skills, and evaluate the feasibility of its implementation and institutionalization. Finally, the authors introduce a recent research project to further investigate and implement transdisciplinary research in the biomedical field.

Six guiding principles for evaluating mode-2 strategies for sustainable development

A new generation of public programs emerges, which specifically addresses complex societal problems we witness today. Programs for these types of complex issues—in this article, we consider more closely the challenge of sustainable development—are characterized by emergent design, learning processes between diverse actors, and adaptive management. Managers of these kinds of programs have new demands for evaluation and evaluators. This article describes prevailing evaluation methods for sustainable development (progress assessment, goal-oriented program evaluation, and program theory evaluation) and the challenges they meet when confronted with the complexity of designing and conducting systemic intervention programs for sustainable development. The evaluation framework that we propose offers guiding principles to assist evaluators in evaluating complex programs.

How can transdisciplinary research contribute to knowledge democracy

In any society, a wide diversity of actors has relevant knowledge concerning important societal problems. In a knowledge democracy both dominant and non-dominant actors have equal access and ability to put this knowledge forward in the process of solving societal problems. In order to enable these actors to contribute meaningfully to decision-making around public policy and research agendas, we argue that a transdisciplinary research process is needed. In this chapter we critically reflect on the principles, concepts and core methods of transdisciplinary research. We first look at the national historical roots of transdisciplinary research, specifically focussing on two countries – Switzerland and The Netherlands. Next we develop a typology of transdisciplinary research. From the perspective of knowledge democracy, we can distinguish two important dimensions in research approaches: the degree of knowledge input of lay groups that is included in a specific transdisciplinary project and the degree in which non-dominant actors are explicitly involved in the decision-making of the development process of policies or research agendas. This results in two different styles of transdisciplinary research. We discuss the similarities and differences of these different styles and approaches. We close this chapter with a discussion on transdisciplinary research styles in relation to forms of democracy – on the one hand basic and representative democracy and on the other hand deliberative democracy.

The Triple Helix Enriched with the User Perspective: A View from Bangladesh

University-industry-government interactions are seen as crucial for the innovative capacity of a country. In this paper, we argue that this triple helix model neglects other important actors, such as the intended users of innovations. We show on the basis of empirical finding that the use of the triple helix model as a prescriptive model has drawbacks. Depending on the context of innovations, the neglect of users in the innovation process may lead to technical results which are hardly used. Moreover, the lack of input from users may lead to missed opportunities. This paper shows the achievements of an innovation strategy that includes the user perspectives in the triple helix—here illustrated by a case study in Bangladesh. The paper ends with a theoretical embedding of the user perspective in studies of the innovation process.

Requirements for biotechnology development: the necessity for an interactive and participatory innovation process

Biotechnology is often presented as a potentially crucial factor in contributing to sustainable development and poverty alleviation in developing countries. Looking at the innovations currently developed through biotechnology R&D, it can, however, be concluded that these innovations are usually inappropriate for this purpose. Scepticism therefore prevails in the development community about the usefulness of biotechnology as an instrument in poverty alleviation. In this article, we look at new approaches to the management of technological innovations in an attempt to design appropriate biotechnologies for the rural poor. We conclude that implementing an interactive and participatory approach to the innovation process involving farmers, scientists and other stakeholders, as well as enhancing a broader process of training of human resources and institutional change is the way to proceed in the field of biotechnology development for small-scale, resource-poor farmers.

TransFormers in knowledge production: building science–practice collaborations

This article places action learning in the context of system innovation, as it studies the potential use of action learning for system change. In order to effect such system change, collaboration between actors from different institutional backgrounds is essential. To gain insight into if and how action learning can be applied for system change, we study three system change projects in Dutch agriculture. We focus specifically on the approaches developed by the project leaders for collaboration between the scientists and the entrepreneurs and analyse how the interaction between these two contributed to the learning process within the project. This article concludes with guiding concepts for action learning for system change in the field of sustainable development of agriculture and beyond.

'[I would like] a place to be alone, other than the toilet'--Children's perspectives on paediatric hospital care in the Netherlands.

Although it is widely recognized that children are willing, capable and legally entitled to be active participants in their health care, parents are generally invited to evaluate paediatric hospital care and services rather than children themselves. This is problematic because parents cannot serve as the only spokespersons for the perspectives and experiences of children.

Mental health recovery on care farms and day centres: a qualitative comparative study of users’ perspectives

Abstract Purpose: Mental health services increasingly incorporate the vision of recovery. This qualitative study analysed and compared experiences of recovery on prevocational services, in order to assess if users make progress towards recovery, relative to a staged recovery model. Method: Data were collected through semi-structured interviews with participants on care farms (n = 14), work (n = 7) and creative projects (n = 5). Results: The transition from past to current lives was described as a progressive, non-linear process, with different stages guided by different goals. Participants on creative projects lacked clear goals, presented less interest in peers and high need for emotional support. Participants on work projects aimed for occupational rehabilitation, but struggled with the patient culture of the peer community. Participants on care farms aimed for daytime occupations and closer contact with society. They experienced care farms as open, real-life work settings where they could exercise responsibility and connect with people. Conclusions: Participants progressed towards recovery, as care farms, work- and creative projects empowered them to leave behind inactive, isolated or disorganized living. In day centres, users focused on self-reflection and personal development (creative projects) or on occupational performance (work projects), whereas on care farms, users fulfilled worker roles in a real-life, open community environment. Implications for Rehabilitation Organized as open communities in real-life settings, care farms facilitate the reflection on personal and social responsibility, and therefore have the potential to help users internalize worker identities and improve their motivation to progress towards recovery. Supervisors on care farms are regarded by users as close contacts within the social networks they develop on the service, a position that allows supervisors to actively engage and promote users’ progress towards recovery. Elements of the farm environment (such as the “normal life”, presence of family members and visitors, and nature) can serve as anchors for supporting the progress towards recovery.

Depression, anxiety, and suicidal ideation among Vietnamese secondary school students and proposed solutions: a cross-sectional study

BackgroundThere is a rapidly growing public awareness of mental health problems among Vietnamese secondary school students. This study aims to determine the prevalence of anxiety, depression, and suicidal ideation, to identify related risk factors, and to explore students’ own proposals for improving their mental health.MethodsA cross-sectional study was conducted among 1161 secondary students in Can Tho City, Vietnam during September through December, 2011. A structured questionnaire was used to assess anxiety, depression, suicidal ideation and proposed solutions. Depression was measured using the Center for Epidemiology Studies Depression Scale.ResultsThe prevalence estimates of symptoms reaching a threshold comparable to a diagnosis of anxiety and depression were 22.8% and 41.1%, respectively. Suicide had been seriously considered by 26.3% of the students, while 12.9% had made a suicide plan and 3.8% had attempted suicide. Major risk factors related to anxiety and depression were physical or emotional abuse by the family, and high educational stress. As proposed solutions, nearly 80% of students suggested that the academic workload should be reduced and that confidential counselors should be appointed at schools. About half the students stated that the attitudes of their parents and teachers needed to change. A significant majority said that they would visit a website that provided mental health support for students.ConclusionsAnxiety, depression, and suicidal ideation are common among Vietnamese secondary school students. There are strong associations with physical and emotional abuse in the family and high educational stress. Academic curricula and attitudes of parents and teachers need to be changed from a punitive to a more supportive approach to reduce the risk of poor mental health. An internet-based mental health intervention could be a feasible and effective first step to improve students’ mental health.