Who gets recognised as an expert in health research?

Coming into research through advocacy and community work

My background in national and international advocacy and representation – from local committees to a WHO advisory committee – shapes how I facilitate community involvement and engagement in my own research. I joined the Department as a lead field researcher on the qualitative HIV and infant feeding study, NOURISH-UK, led by Dr Tanvi Rai, within the Medical Sociology and Health Experience Research Group. The research included extensive involvement from a wide range of stakeholders invested in infant feeding within the context of HIV. The research outputs went on to inform UK pregnancy and HIV guidelines. My recent involvement as a co-applicant on The Partnership for Black People’s Health project (QMUL-led, and NIHR Programme Development Grant funded) continues to shape my thinking around co-production, interdisciplinary collaboration and accountability. This partnership was recently showcased in an NIHR blog. This role, as with many others, often involves bridging gaps between institutions and communities underserved by national and international health research structures. These experiences exposed me to how institutions and communities interact differently, as well as the weight they place on personal and lived and/or living experience.

Questioning what ‘hard to reach’ means

I have been involved in community work for around 20 years. During that time, I have become increasingly uncomfortable with underserved communities being described as ‘hard to reach’. During my younger, more spirited days, I would often retort, ‘the people you call “hard to reach” are people I see every day’. The framing can burden underserved communities into engaging with institutions they have little leverage within. Who is expected to take on that bridging role and at what cost? I also felt increasingly aware of the tensions between integrating ‘lived experience’ to connect and facilitate, while institutional structures remained largely unchanged.

Investigating how health research systems impact participant involvement

Ultimately, my doctoral research is about health research. More specifically, it’s about the ways lived experience is positioned within it, through the formation and integration of lived experience researcher and peer researcher roles. I’ve become particularly interested in the ways lived experience is conceptualised and how epistemic authority is recognised. Pursuing a DPhil within the Nuffield Department of Primary Care Health Sciences has given me space to explore these questions more deeply by interviewing study participants who have been lived experience researchers themselves or have worked with them.

As I reach the middle of my third year, I’ve found myself becoming increasingly interested in questions such as:

• What counts as lived experience?  
• How are academics with lived experience positioned differently from formally titled lived experience researchers?
• How can institutions operationalise participation in practice?

These questions will also shape an oral paper I’ll be presenting at the British Sociological Association (BSA) Medical Sociology Annual Conference 2026, titled ‘Paradoxes of Involvement: Experiencing Institutionalised Ambivalence in Lived Experience Researcher Roles’. Involvement is not only about who is invited into research. It is also about the ways roles, responsibilities and authority are shaped once they are there – and by whom.

When I first became aware of participatory terminology within academic institutions, I was quick to buy into it. However, working between institutions and communities has reshaped my understanding of participatory research. I suspect that my route into research will continue to shape how I approach academic work. My journey also continues to shape the public-facing work I take on, including spaces where research, advocacy and collective storytelling meet.