Consumers leading public consultation: the general public's knowledge of stroke.
BACKGROUND: The need to make health services and research relevant to the general public through user involvement and consultation has been recognized and formalized in guidelines and research publications. OBJECTIVES: We had the following objectives (i) to involve and enable lay people to identify and direct a research study as co-researchers consulting members of the general public about their awareness and knowledge of stroke and stroke risk; and (ii) to consult members of the general public aged between 40 and 65 years old to identify what they know about the signs of stroke and potential risk factors in order to inform local public health programmes. METHODS: A 20-point multiple choice questionnaire was designed by two consumers trained in research skills at a year long training programme. The questionnaire was sent to 250 randomly selected patients from one general practice in North Staffordshire. RESULTS: A 57% response rate was achieved (142 out of 250), with 139 being appropriate for analysis. The current knowledge and awareness of stroke and stroke risk was relatively good. Almost 90% knew that stroke occurs in the brain and most correctly identified the causes as related to impaired blood supply to the brain. Further, upon recognizing signs of stroke, 96% thought it was 'extremely important' to get immediate treatment for someone who may be having a stroke. Seventy-eight percent of respondents stated that they would like further information about stroke. The most popular sources of information identified were: their general practice (51%); television and radio (36%); and friends and family (33%). CONCLUSION: The consumers' involvement has essentially allowed lay people to consult other members of the general public about health issues of national priority with specific local relevance. The involvement of consumers in research needs to be considered as worthwhile if it is to have any lasting impact on local or national services. Future research using consumer involvement will need to decide upon the balance between scientific integrity and the level of consumer direction.