Researchers at University of Westminster have long championed the agency for patients and the public in the field of healthcare research. Having worked on HIV research since the 1980s, Prof Damien Ridge became convinced that patients and their experiences should be elevated in research and in considering healthcare provision. Back then, people living with HIV were often more up to date with treatment developments than doctors who were caring for them. The notion of patients as experts shaped Prof Ridge’s approach in working with those experiencing myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS). A meta-ethnography analysing 29 qualitative studies about patient experiences of ME/CFS, led to a rethink about how to help patients who, until then, had felt gaslighted by professionals, who admitted they struggled to help patients with ME/CFS.
Prof Ridge is taking this approach in his current research, including for example, from working with men and their mental health through to examining how to improve care for racially minoritised patients, uncovering the questions patients want answered, consulting them from the outset, and involving them every step of the way.
Dr. Tom Nadarzynski has undertaken important work in the use of digital technology and sexual health in the service of minoritised communities. Working with Positive East, London’s largest HIV charity based in the heart of the East End, Dr Nadarzynski’s research aims to increase uptake of screening for STIs/HIV among minority ethnic communities through an automated AI-driven chatbot which provides advice about sexually transmitted infections. The research will inform the development and implementation of chatbots designed for minority ethnic populations in public health more widely and within the NHS.