Engagement . . . education . . . empowerment . . . action: The ALOIS Community: Involving caregiver volunteers in research and evidence in dementia

Engagement

The Cochrane Dementia and Cognitive improvement Review Group is running a year-long public engagement project, funded by the National Institute of Health Research. The grant was awarded to test the innovative idea of recruiting carers (and former carers) of people with dementia to volunteer with our group, helping us update and maintain our unique online register of dementia studies, ALOIS – named after Alois Alzheimer: http://www.medicine.ox.ac.uk/alois/.

“All you need to volunteer with ALOIS is an interest and an internet connection” . . . well almost. We are asking our volunteers to read reports of dementia trials, and extract key pieces of information from the reports such as the number of participants, the treatment being tested, the outcomes being measured, and to populate the database directly online. This form of online volunteering is very flexible, and uniquely engaging. We offer a high level of feedback, encouragement and personal support, combined with the opportunity to make a real contribution to dementia research virtually instantly.

The task has proved to be surprisingly attractive to a wide range of people - not just to our initial target group of carers and former carers. As well as carers, our volunteers now include doctors and other healthcare professionals, social workers, school students, university graduates, teachers, and researchers. We are constantly striving to reinforce the value and accessibility of the ALOIS study register as a resource, and how increasingly important the contribution of our volunteers is becoming. To date, over 100 of the study records published on ALOIS have been coded by volunteers.

Education
To assist with recruitment, and to support our growing volunteer community, we are also developing an interactive online course, Making Sense of the evidence in dementia. The course will consist of a series of short units using topical dementia examples to illustrate general research and evidence principles.

We intend to launch the course with around six units in the early Autumn, covering topics such as fair tests, publication and reporting bias, outcomes, levels of evidence, statistical methods, diagnostic tests, and NICE. Each unit will be built around a recent dementia “news” story.

Click on the link below to play the “pilot” unit, A study suggests . . . the real research behind the headlines.

http://aloiscommunity.org/dev/sites/default/files/articulates/Unit1_2/player.html

This initiative is bold and innovative in that it embraces the fact that members of patient and carer groups are much more likely to engage with and act on information directly relevant to their own situation. Currently, consumer contributors to Cochrane will be affiliated to one or two review groups or fields reflecting their experience as a patient, carer or advocate. It makes sense that outreach activities to encourage wider consumer participation should be tailored to address the unique concerns and information needs of different disease “constituencies” in the same way.

Empowerment . . . and action
Through encouraging people to volunteer with ALOIS or to take the online course, we would like to create a virtual community of well-informed and enthusiastic citizen scientists making a real and acknowledged contribution to the work of The Cochrane Collaboration. Particularly for the carers who participate, we envisage that their involvement with the project will arm them the knowledge and confidence to advocate both for themselves and their loved ones at all levels within the NHS. We also want to encourage greater public involvement in research-related activities, including direct participation in primary research studies.

Caroline Struthers
Project Manager, ALOIS Community Volunteer Project
Cochrane Dementia and Cognitive Improvement Group
caroline.struthers@ndm.ox.ac.uk