Emily Porro is an 15 January 2026. (1,003 words)
On 15 January, ARC South London held their Knowledge Exchange event at King’s College London, with the focus on doing inclusive applied health and care research in turbulent times. I attended the event as an awardee on ARC South London’s SHARE Research Capacity Building Programme, supporting practitioners to build capacity for research in their workplaces. As an outreach Navigator in St Mungo’s, working with people rough sleeping in South London, I feel strongly about ensuring service users with high support needs and facing deep social exclusion are meaningfully included in research, in order to share their depth of knowledge and opinion. I was therefore particularly excited about the theme of this event, and the presentations certainly stood out for embedding excluded groups within every stage of their work, from the researchers themselves to the methods they used.
The first panel, facilitated by Zenab Barry, presented the work of the NoRePF project, exploring the impact of No Recourse to Public Funds conditions on maternal and child inequality. The panel included Esther and Sandra, both experts by experience, who shared their distressing experiences of hospital care, housing, working and raising children without access to state support. The power, dedication and care these women showed in assertively ‘giving voice to the voiceless’ was clear. The panel flagged a lack of knowledge within health and social care services about migration and NRPF conditions, leading to further confusion, complication and exclusion, as well as gaps in the data and the exclusion of women with NRPF from health research.
The second panel, facilitated by Natalie St Clair-Sullivan, discussed solutions for equitable care for women living with HIV. The panel discussed how women’s symptoms are often dismissed due to stereotyping and lack of knowledge, putting women at serious and sometimes fatal risk. They flagged that there is actually a rise in HIV and STIs in women, particularly older women, co-occurring with rises in unstable housing, transactional sex, and divorce rates – a fact which is not reaching the public awareness. Grace Kemp of Sussex Beacon spoke particularly about reaching women with unsettled immigration experience and how they may be further excluded from care, drawing links with the previous presentation. Solutions included offering flexible appointments, both online and in-person, properly integrated care, opt-out HIV testing in hospitals which have been used successfully, and increased communication about sexual wellbeing in schools, communities and services.
From these two panels, some themes began to stand out about doing inclusive research. Firstly, both discussed inclusive methods:
- being flexible to ensure groups can access interviews, focus groups or events;
- when designing research, not just pre-selecting from a list of inclusive methods, but ‘stepping back’ to listen to what would really work for these participants, including on an individual level, to facilitate meaningful communication and knowledge sharing;
- supporting experts by experience with reimbursement for their time, psychological support, and training;
- Embedding lived experience within the research team
The NoRePF study, for example, had used cooking groups and story-sharing events as a method to co-produce knowledge, and participants decided which events they wanted to bring their children to, and when they may want to take up the offer of childcare.
Secondly, both panels flagged the lack of professional knowledge regarding intersectional needs – how NRPF status or gender might impact health needs and care. This made me consider how important events like this are – a room full of researchers and professionals in a vast variety of services and specialisms. Though rough sleeping may not appear to be immediately related to the panel topics, I found connections everywhere. I was able to take knowledge from these panels that I will bring back to my practice – for example, arranging sexual health and HIV training for my team, as well as ensuring we have the confidence as a service to discuss sexual wellbeing with our clients and not ourselves making assumptions about health risks in different groups. Professional networks are more than just networking – when inclusivity is at the heart, this is real community building. Such community building upskills teams and allows us to view our work from a new perspective and identify blind spots or hidden needs.
The final presentation was from Cas Lovelock, asking whether lived experience is still at the heart of research, policy and service design. Cas identified that, while lived experience is highly desired, the knowledge and advice shared is rarely acted upon by those in power. In understanding why this might be, they discussed the dynamic of the speaker and the listener – how does the speaker need to narrate their story, what skills do they have to do so in a way that they will be listened to? What skills does the listener need to really hear what they are saying and respond meaningfully? Cas demonstrated the difficulty and challenges in these conversations where power dynamics are acutely present. They shared personal examples of what care looks like at the deepest level, so often absent in services that continue to exclude and harm particular groups.
In the closing remarks, Stan Papoulias noted alarm at attempts to distance ‘evidence-based’ practice from ‘social justice’, as in the Cass Review – this example showed the ongoing challenges for excluded and disadvantaged groups in giving voice to the additional harms and risks they face.
As Cas Lovelock powerfully put it, the purpose of including lived experience is to humanise – when policy and systems require dehumanisation to meet their aims, it will become harder to bring these voices to the forefront, and demand for lived experience may decline. That is why, I reflected, continued community-building and partnership working is essential to continue doing inclusive applied health and care research in turbulent times. Inclusivity in good faith is precipitated by listening and finding the links between us, then understanding our intersectional disciplines from a different perspective. The new insights we find will ensure fewer people are hidden or marginalised from health and social care.
Emily Porro is an