Becoming part of behind the scenes: patients' experiences of co-learning with primary health care teams.

Abstract

Current debates about the involvement of health service users in service delivery, research and education focus on the purpose of their involvement, the methods of their involvement, barriers to their involvement and the impact of their involvement. There is little reported about the experience of service user involvement from the service user perspective although some reports are beginning to emerge. This research study explored the experiences of a group of health service users (patient representatives) who brought their experience of being a patient to contribute to an educational initiative about quality improvement and back pain. That study – the Learning to Improve the Management of Back Pain in the Community (LIMBIC) project, utilised a mixed methods approach to evaluate the impact of the educational initiative on clinical practice and patient outcomes for the management of back pain. Eleven patient representatives, uniquely placed as co-learners, participated with general practice teams learning about quality improvement principles and methods and implementing quality improvements in practice. To build on this learning initiative, the current study used semi-structured interviews to explore the patient representative experience and integrated the findings with existing LIMBIC data. The study illuminated aspects of the service user experience which led to the proposal for a model for co-learning with service users to bring about change. It contributes to the wider knowledge of service user involvement by identifying features of their experience that worked well for them and features that could be improved. The co-learner role is a new direction for service user involvement and represents a new movement in the field of inquiry about opportunities for service user involvement in the future. A debate has been opened about managing expectations of service users and about their potential for leadership and influencing change.