Table 1 Recommendations for working strongly together

Developing research proposals

Consider involving a group of interested lay people when developing research proposals to enhance the public relevance of projects from the very beginning. As the NIHR advises [20], it should be made clear that funding processes can be lengthy and the research may not be funded, but seed-corn funding is sometimes available to pay lay expenses at this point

Being clear about lay contributors’ roles and the impact research can have on them

Provide a clear outline of lay contributors’ roles before projects begin and discuss these with people who are interested in the work, whilst allowing for lay contributors to develop their own ways of working. Although it may not always be possible to detail all aspects of the role upfront, it should at least be stated clearly that involvement in research can be emotionally challenging, especially in qualitative research, where lay colleagues may be exposed to vivid accounts that could be painful or overwhelming, perhaps during data collection or analysis

Supporting lay contributors

In recognition of the potential emotional challenges inherent in research involvement, formal sources of support (for example, counselling services) should be highlighted in lay role descriptions and the facilitators of lay groups should reiterate that these supports are available throughout the project. Informal support is also important, such as facilitators and group members asking how colleagues are feeling and offering to talk things through if they seem upset or withdrawn, sending supportive messages or a card, and keeping in touch regularly. On this project, we kept in touch with emails or telephone calls between meetings, especially if someone was experiencing challenges. The reflective statements, written by lay and professional researchers, were another, effective means of processing feelings because they encouraged us to think about our experiences and discuss them together. Finally, we recommend that professional researchers think carefully about the kind of data they expose lay colleagues to. Lay contributors’ wellbeing should come first, before any other objectives

Addressing power imbalances

Think about ways to address power imbalances between lay and professional researchers from the start. On the FRAMES project the mini-CVs were a simple but powerful way to establish an inclusive approach. Other mechanisms included sharing minutes of project management and steering group meetings with lay researchers and having a joint lay research group/project management group meeting. On a personal level, we tried to counter imbalances through warm, caring and respectful relationships between people

Addressing practical challenges

Find ways to address practical challenges: for example, in the FRAMES study, the simple technique of putting hyperlinks to Teams meeting in an email to lay researchers a few hours before online meetings avoided problems logging into meetings and made more time for collaborative work. Documentation can also be provided as pdfs and in Microsoft Word™, in case anyone does not have access to Word, and some people prefer to receive hard copies of documents

Facilitating lay groups

In our project, it was useful to have both the lay lead and a professional researcher supporting the lay researchers and acting as facilitators. To do this effectively, facilitators need to draw on relational and groupwork skills and knowledge of the research and its methods (in complementary ways: one person does not need to have all these attributes), and they must also have adequate time, as well as a mandate and a clear remit to do the work. Facilitators need to be sensitive to the feelings of group members, so that they are aware if anyone is struggling and needs further support

Building and celebrating relationships

Working strongly together is a relational undertaking and, accordingly, it is important to recognise and celebrate the importance of relationships from the start. For example, the first item on every FRAMES lay research group meeting was a social catch-up, and we gave this as much time and importance as any other agenda item because supporting strong relationships underpinned everything we did. Since relational undertakings are, by their nature, as diverse as the people who engage in them, each group should find ways that fit for them. Good relationships are also grounded on trust between group members. In this study we developed trust by keeping in touch regularly (both about work and social matters), being honest and open with each other and listening to each other