Involving research participants in a pan-European research initiative: the EPAD participant panel experience.

BACKGROUND: Including participants in patient and public involvement activities is increasingly acknowledged as a key pillar of successful research activity. Such activities can influence recruitment and retention, as well as researcher experience and contribute to decision making in research studies. However, there are few established methodologies of how to set up and manage participant involvement activities. Further, there is little discussion of how to do so when dealing with collaborative projects that run across countries and operate in multiple linguistic and regulatory contexts. METHODS: In this paper we describe the set-up, running and experiences of the EPAD participant panel. The EPAD study was a pan-European cohort study with the aim to understand risks for developing Alzheimer's disease and build a readiness cohort for Phase 2 clinical trials. Due to the longitudinal nature of this study, combined with the enrolment of healthy volunteers and those with mild cognitive impairments, the EPAD team highlighted participant involvement as crucial to the success of this project. The EPAD project employed a nested model, with local panels meeting in England, France, Scotland, Spain and The Netherlands, and feeding into a central study panel. The local panels were governed by terms of reference which were adaptable to local needs. RESULTS: The impact of the panels has been widespread, and varies from feedback on documentation, to supporting with design of media materials and representation of the project at national and international meetings. CONCLUSIONS: The EPAD panels have contributed to the success of the project and the model established is easily transferable to other disease areas investigating healthy or at-risk populations.

The binding of visual patterns in bumblebees.

Bees navigating between their nests and foraging sites rely on their ability to learn and to recall many complex visual patterns [1-4]. How are the elements that make up one of these patterns bound together so that the whole pattern can be recalled when it is required? Consider the sentence: 'Dons nod off.' The words in it can be distinguished by the pattern of elements or letters that they contain. Words may contain the same elements arranged in different orders (don, nod), or contain elements of different types, or vary in both these respects (nod, off). We show here that bumblebees (Bombus terrestris) can learn to group the elements of a pattern together, such that different identifiable patterns contain the same elements in different combinations--analogous to the grouping of letters found in words. Our results suggest that pattern binding in bees is achieved in part by linking pattern elements directly together and in part by associating the elements with cues that are related to the context in which the pattern is seen.