User involvement leads to more ethically sound research

Abstract

Involving service users and carers in clinical research can help to improve its quality and relevance. By defining the limits of ethical acceptability, improving research design and management, ensuring information for participants is accessible and ensuring the views of participants are properly respected, user involvement can also improve the ethical conduct of research. But research proposals with good quality user involvement have experienced difficulties in obtaining ethical approval. Not all Research Ethics Committees (RECs) fully understand the active role of service user/carer researchers and the current review system can act as a barrier to involving service users and carers in research. This problem urgently needs to be addressed because it is actually in the interests of RECs to promote and support user involvement. This will require adapting the systems of ethical approval, providing further training for REC members and involving service users and carers in developing and implementing these changes.