The experiential knowledge of patients: a new resource for biomedical research?

Both governments and patients' movements are increasingly making a plea in favour of the active participation of patients in biomedical research processes. One of the arguments concerns the contribution that patients could make to the relevance and quality of biomedical research based on their 'experiential knowledge'. This article reflects on the validity of patients' experiential knowledge in the context of biomedical research processes. Since a conclusive argument on the validity of patients' experiential knowledge could not be reached on the basis of theoretical reflection alone, a pragmatic approach was chosen that assessed the validity of patients' experiential knowledge in terms of its practical usefulness for biomedical research. Examples of patient participation in biomedical research were sought through literature research and more than 60 interviews with (bio)medical scientists, patients, representatives from patients' organisations, and health professionals in the Netherlands and the United Kingdom. These examples were analysed for a concrete contribution by patients to the research process. Twenty-one cases of patient participation in biomedical research were identified. After further analysis, concrete use of patients' experiential knowledge could be traced for nine of these cases. These findings suggest that patients' experiential knowledge, when translated into explicit demands, ideas, or judgements, can contribute to the relevance and quality of biomedical research. However, its deliberate use would require a more structural and interactive approach to patient participation. Since the implementation of such an approach could face various obstacles in current biomedical research practices, further research will be needed to investigate its feasibility.Patient participation Experiential knowledge Consumer involvement Biomedical research The Netherlands United Kingdom

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