The progress of lay involvement in the NHS Research and Development Programme

Abstract

The Central Research and Development Committee is seeking to involve lay perspectives in the NHS R&D Programme. This paper describes some recent examples of lay involvement in each step of the research process from setting the agenda to making use of research findings. Innovative approaches have involved lay people in identifying research need and in the subsequent commissioning process. Lay contributions have given particular emphasis to information and support, whether this is in maternity care, cancer care, HIV prevention, participation in clinical trials or systematically reviewing evidence of effectiveness. Difficulties in identifying appropriate lay people to involve in research, their different skills, their lack of resources and support and their need for time for thought and discussion with their peers have all posed problems. Suggestions for overcoming some of these obstacles are presented, including resources, training and support, and clarification of the role, nature and potential for lay involvement. Lastly this paper considers the urgent need to learn from the efforts made so far, possible approaches to evaluation and how this is being addressed by a newly convened advisory group to the Central R&D Committee.