| 
| 
| 
| 
| 
Bottom-up prioritisation of research goals: the Quality Research in Dementia Network
 |
 |
 |
 |
In the early 1990s, the two-million-pound annual research programme of the Alzheimer's Society focused on the puzzles scientists wanted to solve, rather than on the needs of the Society's thousands of members. Lynne Ramsey was one such member. A prison inspector from South London, she cares for someone with dementia. As a fundraiser, she wanted to know whether the money she raised for the Society was producing useful results.
The research funds, she learnt, were awarded by "peer review", a standard procedure in scientific research. Applicants submitted their proposals to a panel of experts who assessed only their scientific rationale. The Society was therefore funding research without taking account of the extent to which it would benefit people with dementia and their carers.
In 1998 the Society started to transform the way it funded its medical research. Scientists applying for funds were required to provide a jargon-free description of their proposed research and the possible benefit to people with dementia. The applications were then assessed by Ramsey and her fellow members of the society's Quality Research in Dementia (QRD) network, who rated each project application on a scale of one to ten. Those with the highest scores were then included in the next stage of decision-making.
The citizen-led nature of this research funding process comes from the combination of the QRD's ranking scheme together with an extended peer-review process: formal meetings attended not only by scientists with expertise in the area concerned, but also by carers like Ramsey. Once the scientists applying for money have made their presentation, the "citizen scientists" ask questions first, before the more technical experts voice their questions.
One benefit of the extended peer-review system is that it has obliged scientists to communicate their science in a way that is accessible to non-specialists. Opposition to this part of the scheme from some scientists was initially fierce, yet today the QRD's success in improving the cost-effectiveness of research in the field has silenced most critics. Now it is the lay members of the QRD network who decide the sorts of medical innovations that are likely to increase the quality of life of patients and carers.