A model and measure for quality service user involvement in health research

Abstract In the UK, researchers across the health professions are increasingly being encouraged by policymakers and research commissioners to ‘involve’ service users in research. A recent review shows there is some evidence that involving patients, carers, relatives, social or community groups directly and actively as part of the research process can improve the conduct of research studies and the impact of the findings. Yet, little is known about how involvement is played out within research studies and there is a need for more critical and consistent assessment of what constitutes quality involvement. The overall purpose of this paper is to support learning about quality service user involvement in health care research. The aim is to provide service users and researchers with a structured and consistent way to reflect and report on their experiences. A range of philosophical and social theories of power and empowerment were reviewed and synthesized to create a model of quality involvement. The analysis encompassed both service user factors (what a person feels able to do, whether they feel their potential is being fulfilled and their sense of being valued) alongside research factors (research relationships, ways of doing research, research structures). A model is presented (Quality Involvement Framework), which contributes theoretically informed perspectives about the meaning and assessment of quality service user involvement in research. The model is developed as a practical measure (a Quality Involvement Questionnaire) for researchers and service users to be more reflective about the constraints and possibilities of involvement. The tools presented here could help research teams to examine personal factors and the research contexts that influence the nature and quality of service user involvement in research. They may also help to identify reoccurring issues about quality which could inform future policy, practice and research.