Patient participation in decision making on biomedical research: changing the network

Participation of end users in decision-making on science is increasingly practiced, as witnessed by the growing body of scientific literature on case evaluations. In the biomedical field, however, end-user participation in decision-making is rare. Some scholars argue that because patients are stakeholders and relevant experts, they could also provide important contributions to decision-making within the field of biomedical research. But what strategies could be used to effectively implement patient participation in decision-making on biomedical research? In this article, we analyze strategies for patient participation and conclude that these can hardly be regarded effective because they do not ensure patients' structural influence on decision-making. We identify obstacles for effective patient participation, which seem to reflect a resilience of the current biomedical decision-making network. We subsequently elaborate on the concept of transition management in the search for clues on how to breach this resilience and change the network toward the inclusion of patients. © 2007 Sage Publications

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. © The Author(s) 2009