Ives et al claim to have identified a paradox within patient and public involvement in research1—that is, that the benefits of PPI can never be fully realised because when a lay person is trained to a level at which they can make a useful contribution to research, they lose their unique ‘lay’ perspective. They conclude that we should not train lay people in research before involvement. Ives et al also conclude that we should not develop a collaborative approach to PPI (...) in conducting research. Both these conclusions are flawed. PPI does not always involve the lay person acquiring the same skills as a researcher, and even when it does, that person never loses their unique ‘lay’ perspective.PPI is a complex activity that is highly context dependent. There are many different kinds of involvement requiring different kinds of lay expertise. In many cases the lay person does not need to acquire research skills in order to be effective. They can make useful contributions without being ‘turned into a researcher’. The views of the lay person are complementary to those of the technical experts. PPI provides an insight into the interests and concerns of the participants and …. (shrink)

In practice, the role of lay members of research ethics committees (RECs) often involves checking the accessibility of written materials, checking that the practical needs of participants have been considered and ensuring that a lay summary of the research will be produced. In this brief report, I argue that all these tasks would be more effectively carried out through a process of patient involvement (PI) in research projects prior to ethical review. Involving patients with direct experience of the topic under (...) investigation brings added value beyond the contributions typically made by lay REC members, who are often not patients themselves. This is because PI tailors the design and conduct of research to the specific interests and concerns of the people who will actually take part in a project and make use of its findings. If a project has PI in its early stages, then a similar input from lay REC members could at best result in duplication of effort and at worst create the potential for conflict. The rationale for lay REC membership will therefore need to change from ‘contributing a patient perspective’ to ‘ensuring transparency and public accountability in REC decisions’. This has implications for addressing more strategic questions about lay REC membership, including who is best recruited to the role and how they should be expected to contribute in practice. (shrink)

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. (shrink)