ALOIS Community

Article type
Authors
Noel-Storr A1, McShane R, Malouf R, Marcus S
1Nuffield Dept Medicine, Oxford University, Oxford, UK
Abstract
Background: In July 2009 the Cochrane Dementia and Cognitive Improvement Group (CDCIG) launched ALOIS an online, study-based register of controlled trials in dementia management and prevention and cognitive enhancement in healthy (www.medicine.ox.ac.uk/alois). The site was initially designed, created and maintained by a small core team based predominantly in the UK. The processes that were set up to maintain ALOIS and the tasks involved in keeping the tool both up-to-date and comprehensive meant that any voluntary assistance offered was readily accepted. This was just the beginning. Aims: In early 2010 a project began with the aims of creating a specific and defined role and infrastructure for those wishing to volunteer with ALOIS. The project had two main strands. The first was aimed at recruiting those interested in becoming involved with evidenced-based dementia care. The second strand concerned the creation and development of the software infrastructure and workflows to support this volunteer community. Methods: The core ALOIS team and web developers set about creating a defined and user-intuitive community area on the existing ALOIS site. This process involved working with existing volunteers to find out what they required and wanted from such a space. This included not only easy access to their task list but also access to one another, a forum where ideas and learning could be shared, better ways of logging problems or questions with the core team, a volunteer profile area where volunteers could list their specialisms and talk a little about their background and interest in dementia. Results: We are still at the early stages of this project but already a volunteer community area is in existence. The space enables users to view their task list which usually comprises a list of references to potential RCTs and CCTs that need to be studified by the volunteer. This studyfication takes place on the site. Once done the volunteer submits his/her work for checking by the TSC before being published. Volunteers are also able to communicate with each other through the development of a forum and can access all the required documents needed to help them with their task (such as the full papers to references and the CDCIG coding manual). Conclusions: This ALOIS community work with CDCIG to help to maintain an up-to-date and comprehensive study register. They also learn more about evidenced-based work in this area. At present around one third of the ALOIS community are carers of those with dementia. ALOIS aims to make information about evidenced-based dementia practice accessible to all as well as providing people with the opportunity to make a difference in this area.