• Research Ethics

Ives et al claim to have identified a paradox within patient and public involvement (PPI) 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 the end users of the research, which are distinct from those of the technicians.

This does not mean that training is not required before PPI, particularly at the design stages. It is true that lay people often have sufficient knowledge and understanding to evaluate research without being ‘trained in research’. They know what research would help them, how to make participation a positive experience and how best to communicate the findings to a lay audience. But they still need some explanation of the context of the research. They need to know enough about the wider research world to understand where their involvement can add the most value. They benefit from learning about the role of funders and ethics committees, for example, as well as knowing enough research terminology to be able to follow and contribute to discussions. This is not about equipping them to do research, but giving them sufficient background to be confident and effective in their involvement role.

Lay people also need to know enough about the research process to appreciate which aspects cannot be altered without harming scientific quality. But ultimately it is always the researchers’ responsibility to draw on their technical expertise to ensure the robustness of the research.

Not all involvement roles require the same level of understanding of research, and researchers are likely to benefit from working with people with different types of knowledge and experience within a single research project. Lay people who have been ‘trained in research’ and understand the issues facing researchers may be ideal candidates for consultation on the more technical aspects of research design (eg, to identify what outcome measures would be of most benefit to patients) or to work with collaboratively as members of a steering group. A lay person without any formal training in research who is ‘closer to the ground’ may be the ideal person to consult about recruitment processes and materials.

There are some instances of PPI, where the involved lay person does take on the role of researcher and does need to acquire the same skills. One important example is the involvement of peer interviewers in qualitative research projects. This has been shown to improve the quality of the data and the depth and validity of the analysis.2 The impact of this involvement is crucially dependent on the peer interviewer acquiring the appropriate research skills at the same time as maintaining their lay perspective and drawing on their unique expertise. So even in this case, where the involved person is trained to the point of becoming a highly skilled researcher, there is still no paradox. In fact the training for peer researchers should be distinct from that for researchers, to ensure that they continue to use their lay status to deliver the expected benefits.

Involving peer interviewers improves the validity of the data because interviewees feel more at ease with their peers and are more likely to be open and honest.2 This is particularly important in research involving seldom-heard groups.3 However, this benefit is only realised if the lay interviewers are adequately trained in interview skills and have, for example, the right interpersonal skills, to make them ‘good interviewers’.4 ,5 There are also reports of peer interviewers conducting poor-quality interviews because of over-familiarity with the interviewee.3 ,6 The interviewer (and/or the interviewee) can make false assumptions about a shared understanding of what is being said, and fail to expand on important themes. The peer interviewer therefore needs to be trained to recognise that the ‘shared experience’ can also have a negative impact on data quality and be prepared to use it for maximum benefit.7

In conclusion, the assumed paradox does not exist in many cases of PPI, because the training required to prepare people to the point at which they can contribute is fairly limited. Such training is about helping people understand the basics of research, not about training people to the level of being able to design and run the research. It is mistaken to conclude that lay people should always be involved without any ‘training in research’. Doing so might lead to PPI processes that might fail. It would also be wrong to conclude that the PPI processes that do require lay people to acquire the same skills as researchers should not be developed. Some of the major benefits of PPI, such as involving peer interviewers, can only be assured through such a collaborative approach. In these cases, providing ‘training’ for these roles far from reduces the impact of the lay perspective. When done properly, such training equips the lay person to conduct high-quality research and also prepares them to use their lay status to maximum advantage.