The LEAP elaborated why the incorporation of lived experience both in the process of conducting the research itself, and in the process of designing and submitting funding applications for the proposed research, must be central to the study design. Key learnings that may be useful to neuroscience and related research, however, are about what enabled this LEAP to prove productive, even in the difficult time of COVID-19 lockdown.
Desirable features of LEAP sessions
The LEAP was productive thanks to a number of features. The use of language immediately emerged as important both for the communication of information but also for crucial clarification of working relationships. Key terms that required clarification were 'service user', 'person seeking help' and 'co-production', so that the role of this LEAP could be put in black and white. Efforts were made to ensure that LEAP members knew the purpose of their inputs and how discussions would be taken forward, but also how sessions would run, what was expected of each member and key dates. Next, presenting and explaining the constraints imposed by technical limitations involved in brain-scanning research (such as the statistical difficulties) was an important challenge to engage with. It was demanding, and benefitted from the contribution of a PE expert as well as a clinician-researcher. While challenging, it was essential in terms of setting expectations of which elements of the study design had room to be shaped and improved by the LEAP, and which elements might be harder to adapt to feedback without making the data impossible to analyse.
The clinical background of both the researcher (MM) and SUGAR facilitator (SB) were also important in bridging the research - lived experience communication gap. Often, it is difficult for researchers to put lived experience into practical use in the form that it is directly expressed. When this happened in our case, the professionals with clinical experience could more easily imagine the expert experience described in its clinical setting, and check back whether this or that translation of the point made into research practice would be faithful to the original experience. In addition, having two different professionals experienced in facilitating groups helped ensure that all voices, expert and professional, were heard in a supportive environment. Overall, as has long proved the case with clinical research, the absence of highly technical expertise in LEAP members in no way impeded their ability to contribute creative ideas and critique the proposed research. Their questions, comments and ideas were thoughtful, meaningful and challenging to the research design. Notably, this group was established to feed into research, so members were already familiar and experienced in many aspects of the research process. Practically, the Zoom-based meetings were a convenient and economical way of conducting the LEAP, but required technical support and coordination, suffered from technical ‘glitches’ and did not offer the same quality of a real life working group (‘bring your own biscuits’).
Increasing research impact beyond the academic community
The LEAP focused on increasing the relevance of the proposed research for stakeholders not only because it is desirable in itself, but also to help attract research funding. As an example of funder requirements, the Economic and Social Research Council requires ‘a clear demonstration of 'real world relevance' and 'impact beyond academic community', especially 'impact for service users'. The LEAP process helped us better understand these ‘impacts’. First, what persons seeking help want and need may not be confined to the classical intervention model. The latter is about making discoveries that can inform how professionals intervene to directly target symptoms and disabilities. However, useful impact also includes steering research towards what help-seekers want - especially, what issues they prioritise to research, and what they would like to learn about these issues. The LEAP process thus clarified that stakeholders seek research that challenges pathologizing experience, and promotes stakeholder understanding. In our project, the LEAP consultation suggested that researchers should communicate what we know already, but also share what our key questions are about the role of the brain in trusting in psychological treatments. More specifically, how the brain learns is very important for therapy, and it important for stakeholders to have access to the key questions about such learning. Finally, the LEAP challenged the research as it was proposed, because of its lack of people with lived experience as full participants (see below). Addressing these gaps can improve the relevance of research beyond academia, and hence make it more attractive to funders and more impactful to stakeholders.
Roles of experts by experience within the proposed study
The LEAP thus suggested roles for people with lived experience not only as study participants, but also to aid the delivery of proposed research. Experts by Experience can provide important direct input throughout the study by shaping and overseeing the experience of study participants and providing support where necessary, especially if the latter have vulnerabilities. Those with lived experience who can act as ‘bridge people’ between a target research population and the research study would be invaluable as a source of support, advice, participant recrutment and as a point of contact. LEAP members recognised that this has worked effectively in other relevant projects.
Rendering the proposed research more relevant to mental health
The LEAP helped address the issue that the setting of real-life therapy, which our research aims to improve, is very different from what happens in a laboratory. The LEAP discussed how to use laboratory experiments to investigate trusting and engaging with psychological therapy.
First, it was pointed out that both the experience of, and decision-making within therapy may be quite different in people with lived experience, or people potentially seeking help, compared to largely indifferent volunteers. There were also concerns that including only volunteers with no lived experience would lack authenticity, as these individuals may not be able to “get into the shoes” of someone seeking help. This is hugely important for the relevance of the study. The study should aim to transition safely and efficiently from initial ‘low stake’ participant groups (eg those without lived experience) to ‘high stake’ groups (subclinical or help-seeking participants). Implementing this transition within the study would benefit from LEAP involvement. This would help both in identifying differences in the perception of the experiment itself, important for the analysis of the study, but also, crucially, in providing optimal support for sub-clinical participants during the study.
The LEAP then addressed ecological validity. For task studies to be relevant to stakeholders, task content needs to be ecologically valid, i.e. representing real concerns. In our case, it is crucial to represent the issue of patient-therapist trust as closely as possible. This brings important difficulties which are poorly addressed by current paradigms, which largely rely on monetary exchange. LEAP members stressed that the internal motivation of the participants, as opposed to extrinsic motivation induced by money or punishments, is important to increase study relevance. According to the LEAP, external motivation (doing it for money) and/or acting (in the sense of going through the motions) greatly reduce relevance. The recruitment, task content and conduct of the study should aim to maximise genuine participation in the endeavour.
In therapy, trust can break down when help-seekers feel ‘let down’ by professionals, but this is difficult to study in the laboratory (Fig. 2). Some key determinants of trust for help-seekers were already thought about in the study, but others were not. The LEAP pointed out the importance for trust of first impressions and of previous experience, of pre-therapy information shaping expectations, and of the communication of emotion between therapist and patient (both verbal and non-verbal). The LEAP also suggested that greater relevance would be achieved if timing factors such as length and number of appointments could be framed within the study, as they are crucial determinants of the readiness to trust.
Finally, the LEAP made some useful, straightforward suggestions to improve the research design, such as the inclusion of questionnaires asking about psychological attachment patterns. These might help further understand how the central issues studied, such as the role of learning, might differ in those with different relationship experiences while growing up. The LEAP thus improved research design beyond lived experience as might be narrowly understood.