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Empowering lived experience experts in low income countries
Dr Rakhshi Memon (UCL Engineering) used Global Engagement Funds to evaluate how people with lived experience can help to improve healthcare in Pakistan, India, and Nigeria.
6 May 2026
Lived experience experts are people who have direct, personal experience of a particular issue, such as a health condition, disability, or social challenge. This first-hand knowledge can help improve understanding, policies, and services. However, they are often excluded from decisions about the issues they have unique insight into. Researchers and decision-makers therefore need the skills, resources, and commitment to empower and meaningfully engage these experts.
Dr Rakhshi Memon, a Research Fellow in UCL Engineering’s Department of Science, Technology, Engineering and Public Policy (STEaPP), focuses on community engagement and involvement. She established the Community Engagement and Involvement Group (CEIG), bringing together partners from Pakistan, Nigeria, Türkiye, Jordan, India, and Sri Lanka. Through this work, she identified a key challenge: funders and institutions often use different frameworks and expectations for engaging lived experience experts, creating inconsistency across research and solution design.
Earlier research, including a 2022 scoping review, focused largely on high-income countries. To address this gap, Rakhshi and co-investigator Professor Sarah Edwards secured Global Engagement Funds to expand the work to low- and middle-income contexts. The project gathered insights from lived experience experts in Pakistan, India, and Nigeria to better understand how community engagement models can be adapted to these settings.
Elevating lived experience in research
“We as researchers read the evidence and think we know about something, but unless we actually speak to the people who are going through the journey, we don’t have a proper understanding,” Rakhshi explained. “We need to listen to their stories, and gain insights into people who have been on the pathways we’re investigating. This has to be part of the change we are bringing about.”
With the UCL Global Engagement Funds, plus additional support from Pakistan Institute of Living and Learning (PILL), Rakhshi was able to travel to Pakistan and Nigeria to facilitate discussion groups with lived experience experts, and gain input to co-create a Community Engagement and Involvement (CEI) Framework. “It was a great learning experience for me to look at things through the lens of the people who are living through, or who have had, particular experiences,” Rakhshi said.
Some themes were prevalent in each context. “In Pakistan, people said they didn’t want sympathy – because it’s patronising and patriarchal – but they want empathy,” Rakhshi said. “In Nigeria, mistrust of researchers came up a lot. I believe this all shows we need to communicate with people more and hear their stories, to plan change from the eyes of the end beneficiaries.”
While Rakhshi’s research focuses on mental health, a colleague interviewed lived experience experts from the transgender community in India as part of the project. “This also highlighted a number of areas that need improving, particularly in the health system,” she said.
Integrating lived experience into research
As a result of this work, the co-created CEI Framework maximises the involvement of lived experience experts, which Rakhshi hopes will shape inclusive and impactful research in the future. CEIG is growing, with members working with breast cancer survivors in Sri Lanka, and active groups in Türkiye, Jordan, and Bangladesh, as well as in the UK working with South Asian and African Caribbean people.
“We have put together a governance structure, ensuring research teams have lived experience experts involved, Rakhshi said. ”We’ve set up an advisory body, so the power dynamics are at least equal – if not better – for the lived experience experts. We’ve even started to get trained lived experience experts to become trainers as well, and they have become part of the research team and co-applicants for future funding.”
Next, the collaborators want to translate the CEI Framework into national and regional languages in Bangladesh, India, and Pakistan, and pilot the framework in specific contexts too. Ultimately, the aim is that research moving forward ensures lived experience experts are integral.
“For me, the true impact would be that any research we’re doing is led by lived experience experts ,” Rakhshi said. “We as academics, as well as health professionals, must ensure we don't just pay lip service to this expertise. Their voices and their stories must be embedded in the change that we're trying to bring about.”