Background: Usually experts decide on which research is worthwhile, yet it is government policy to involve service users in research. There has been a lack of published research about involving patients from minority ethnic groups and people from deprived areas in setting research agendas. In this study we wanted to hear the voices of patients that are not often heard.
Aim: To find out the research priorities of people with diabetes from an inner city community and compare these with current expert-led research priorities in diabetes.
Design of study: A qualitative study using a participatory approach with consumer groups.
Setting: Primary care within inner city Nottingham, UK.
Method: Thirty-nine adult patients with diabetes with varying ethnic backgrounds recruited from three general practices. Six focus groups carried out in participants' preferred language, analysed using the constant comparative method.
Results: Nine main themes equating to research priorities were identified. Within these themes, information and awareness, service delivery and primary prevention of diabetes emerged as the main factors. There were no science-based topics and there was more emphasis on culturally influenced research questions, which differed from recent Department of Health priorities. There were several themes about service delivery, patient self-management and screening and prevention of diabetes that overlapped.
Conclusions: There is some divergence between expert-led and patient-led agendas in research about diabetes. Patient perspectives have a significant influence on research priorities, and there are likely to be several different patient perspectives.