Aims: We aimed to map out the scope and type of health research studies with patients involved as co-researchers throughout the research process and to explore the outcomes and experiences of such research. Methods: We conducted a narrative review by systematically searching selected databases. A total of 1451 hits were identified and screened, and 17 studies were included and categorised by type of health problem, design, publication sources and modes of presentation. We conducted an inductive, iterative analysis of outcomes and experiences of patient involvement. Results: We identified two types of impact from studies with patients participating as co-researchers: (a) patient involvement as primary focus, where seven articles largely reported and reflected upon the shared experiences, and (b) patient involvement as strategy, where 10 articles presented results from empirical studies of specific health problems, with patient involvement used as a strategy to expand understanding. The first group of studies reported collaborative processes and resource investments, while the second group addressed specific health problems from a distinctive perspective due to patient involvement. Several studies in both groups repeated or confirmed positive values of user involvement rather than providing original findings. In both groups, methodological standards were often downgraded to provide access for the co-researchers. Conclusions: These articles, where the co-researcher model represents the contemporary superior level of patient involvement, may indicate that mere collaboration efforts are prioritised at the expense of knowledge outcomes and scientific quality. Collaboration formats other than participation as co-researchers may be necessary for patient involvement in medical research to add to the existing knowledge.
BackgroundEvidence-based policy (EBP), a concept modelled on the principles of evidence-based medicine (EBM), is widely used in different areas of policymaking. Systematic reviews (SRs) with meta-analyses gradually became the methods of choice for synthesizing research evidence about interventions and judgements about quality of evidence and strength of recommendations. Critics have argued that the relation between research evidence and service policies is weak, and that the notion of EBP rests on a misunderstanding of policy processes. Having explored EBM standards and knowledge requirements for health policy decision-making, we present an empirical point of departure for discussing the relationship between EBM and EBP.MethodsIn a case study exploring the Norwegian Knowledge Centre for the Health Services (NOKC), an independent government unit, we first searched for information about the background and development of the NOKC to establish a research context. We then identified, selected and organized official NOKC publications as an empirical sample of typical top-of-the-line knowledge delivery adhering to EBM standards. Finally, we explored conclusions in this type of publication, specifically addressing their potential as policy decision tools.ResultsFrom a total sample of 151 SRs published by the NOKC in the period 2004–2013, a purposive subsample from 2012 (14 publications) advised major caution about their conclusions because of the quality or relevance of the underlying documentation. Although the case study did not include a systematic investigation of uptake and policy consequences, SRs were found to be inappropriate as universal tools for health policy decision-making.ConclusionsThe case study demonstrates that EBM is not necessarily suited to knowledge provision for every kind of policy decision-making. Our analysis raises the question of whether the evidence-based movement, represented here by an independent government organization, undertakes too broad a range of commissions using strategies that seem too confined. Policymaking in healthcare should be based on relevant and transparent knowledge, taking due account of the context of the intervention. However, we do not share the belief that the complex and messy nature of policy processes in general is compatible with the standards of EBM.
This article explores food safety regulation in five European countries by comparing their main legislation and organizational characteristics. The aim is to gain insight into the particular characteristics of food safety regulation, understand major differences and similarities, and reach a firmer understanding of how regulation evolves. Food safety regulation concerns vital questions, and is a field with a long history. Food scandals – in particular the 1996 BSE crisis – and European integration have prompted major changes. The BSE scandal revealed important underlying conflicts of interest and dilemmas concerning the twin objectives of ensuring safe food while also ensuring honest trade in food. This led to a questioning of existing structures and paved the way for new regulation. The authors’ main finding is that food safety regulation has similar origins, addresses similar tasks, and raises similar problems and conflicts in all five countries. A tension between protecting public health and paying heed to business interests, and a struggle for control over this policy field between the administrations of health and agriculture, are common features. However, the configuration of food safety regulation in legislative and organizational terms varies. The comparative focus reveals that national context and history are important for understanding change. This leads to the conclusion that the framing and reframing of the field depend largely on how it is structured and regulated initially, as well as on the constellations of interests and values that are operative and legitimate in each context.
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