Involving Patients in Research: the Challenge of Patient-Centredness

Background: The concept of patient-centredness is increasingly being incorporated into modern healthcare practice, yet little attention has been given to the development of patient-centred principles in research. Aims: This study aimed to establish convergent validity for a definition of patient-centredness using abstracts from schizophrenia research and to explore the experiences of psychiatrists and service users taking part in research that was designed to be patient-centred. Methods: Mixed methods were used in this community study. Results: Thirteen service users and three psychiatrists took part. Service users rated eight of 60 research abstracts as patient-centred, even though 30 of these had been previously rated as such by psychiatrists. There was some accord between psychiatrist and service user ratings as seven out of eight abstracts were identified by both groups as patient-centred. Process aspects of research were valued by service users, for example, being respected as collaborators. Both groups reported benefits to participation in patient-centred research, such as feeling valued and breaking down barriers between doctor and patient. Conclusions: While there is some agreement between professionals and service users as to what constitutes patient-centred research, other process-related factors are important. Patient-centred research is valued by both service users and doctors and should be incorporated into future studies.