Our Lived Experience in Navigating Science (LENS) Matters

Project Overview

Our Lived Experience in Navigating Science (LENS) Matters (2025-2028) is a South Africa-based research and learning initiative exploring how researchers' own lived experiences of mental distress, trauma, neurodivergence, and other forms of psychosocial adversity shape the way mental health knowledge is produced.

The project begins from a simple but often overlooked premise: many of the people conducting mental health research also live with the realities that the field seeks to understand. Rather than positioning lived experience as something external to research, the project recognises that researchers themselves often navigate complex and overlapping identities as scholars, clinicians, activists, and individuals with lived experience.

Across mental health science, lived experience is increasingly recognised as important for producing research that is ethical and socially grounded. Yet it is most often incorporated through advisory roles that leave dominant hierarchies of expertise intact. Our LENS Matters instead asks what becomes possible when lived experience is understood as a lens through which research itself is shaped, influencing how questions are asked, how ethics are approached, and how knowledge is interpreted.

Commissioned by Wellcome as part of its Lived Experience Innovation Fund within the Mental Health priority area, the project contributes to a broader programme exploring new ways of recognising and supporting lived experience within mental health research.

Grounded in the South African context but globally relevant, the project examines how lived experience operates within research systems themselves, challenging assumptions about neutrality, expertise, and authority in scientific knowledge production.

Our Role

Our LENS Matters is led by Pivot Collective in collaboration with researchers from Stellenbosch University and King's College London, and in partnership with the McPin Foundation, The Banyan, and United for Global Mental Health.

The project combines empirical research with participatory learning. Initial work includes a national survey of mental health researchers with lived experience, stakeholder interviews across the research ecosystem, and landscape analysis of how lived experience is currently recognised within mental health science.

Central to the project is the LENS Learning Collective: a cohort of approximately 15–20 researchers with lived experience who participate in a facilitated learning process. Through storytelling workshops, methods labs exploring participatory and decolonial approaches, and small-scale co-learning projects within their own research contexts, the Collective creates space to reflect on identity, disclosure, research culture, and ethical practice.

Pivot leads the participatory design and facilitation of this learning journey, drawing on our expertise in trauma-informed facilitation, adaptive learning processes, and participatory approaches to knowledge production. Members of the project team also bring their own lived experience into the work, shaping the ethos of the project and the way we approach questions of safety, disclosure, and care.

What We're Learning

Early learning from the project highlights how many mental health researchers navigate multiple and shifting identities, as scholars, clinicians, activists, and individuals with lived experience. These identities shape how researchers approach their work, influencing research questions, ethical commitments, methodological choices, and relationships with communities.

At the same time, researchers with lived experience often occupy liminal positions within research institutions. They may be recognised as researchers but not as legitimate holders of experiential expertise, or valued for their lived experience while their scientific authority is questioned. Decisions about whether and how to disclose lived experience frequently involve navigating stigma, professional expectations, and concerns about career risk within academic environments that continue to privilege ideals of neutrality and detachment.

The project is also revealing how lived experience can meaningfully shape research practice when it is recognised as a form of epistemic authority rather than an external perspective. Experiential knowledge can influence how research questions are framed, how ethical dilemmas are understood, how relationships with communities are built, and how findings are interpreted and shared.

Finally, the project is demonstrating that supporting lived experience within research is not only about individual researchers but about the institutional and relational infrastructures that surround them. Issues such as supervision, research governance, disclosure norms, workload expectations, and support structures all shape whether lived-experience-led research can be practiced ethically and sustainably. By creating a structured space for collective reflection and experimentation, the project is exploring how research institutions might move beyond symbolic inclusion toward research cultures that genuinely value experiential knowledge alongside professional expertise.

Emergent Insights

This project is still in motion, and what follows is not a set of conclusions. It is a record of noticing: things that have surfaced, unsettled us, or opened up new questions as the work has unfolded.

The team doing the work is part of the work. One of our earliest and most persistent realisations is that the preparation required to hold this project — the internal conversations, tensions, and relational labour within the team — is not separate from the research itself. We have come to understand ourselves as a kind of embedded autoethnographic collective: researchers, participants, facilitators, and observers simultaneously. The work to do the work is the learning.

Lived experience in research carries costs that are rarely named. Researchers with lived experience often navigate impossible-seeming choices about whether and how to disclose. These are not simply personal decisions, they are shaped by institutional cultures that reward performance of objectivity and treat vulnerability as incompetence. We have noticed that even within spaces explicitly designed for this kind of openness, disclosure remains risky.

What gets called a "mental health challenge" is often an institutional one. A recurring insight has been that distress frequently resides not in the individual but in the structures around them. Insulin injections are accommodated; therapy appointments are questioned. Some bodies and conditions are legible within academic culture; others are expected to adapt invisibly. This is structural ableism, and it runs through research environments in ways that are rarely surfaced.

Hierarchy and lived experience are in tension and that tension is productive. University systems are built around rank, credential, and institutional authority. Lived experience operates differently, it destabilises fixed hierarchies of expertise. These are not necessarily opposing forces, but institutions struggle when authority becomes multi-dimensional. This project is sitting with that discomfort rather than resolving it prematurely.

Sometimes you have to go forward to go backward. We are learning that the safest and most generative routes into difficult material are not always direct. Approaching hard things (trauma, disclosure, institutional risk) by first imagining the life one is building beyond them can open up what confrontation closes down. This has implications for how we hold the Learning Collective.

Inclusion is not enough. Researchers with lived experience are often included in name but not in authority. And our LENS Matters itself cannot claim to represent all lived experience; there are many people whose knowledge never makes it into academic spaces at all. Centering researchers with lived experience is not a substitute for community-led knowledge production; it is a different and complementary intervention. We are holding this carefully.

Care and rigour are not opposites. We are wary of a framing in which centring care means abandoning the drive and discipline that research requires. Productivity and reflexivity can co-exist. The question is not whether to care, but how institutions might be restructured so that caring is not a form of resistance but simply how the work gets done.