'Nothing about us, with us'. Involvement of Experts by Experience in Homeless and Inclusion Health Research
The Problem
Inclusion Health aims to prevent and tackle health and social inequalities among the most vulnerable groups in society, such as people who have had experiences of homelessness, imprisonment, drug addiction, and sex work. Research has consistently shown that these groups have very high rates of death and disease, even when they have access to free, high quality health care. Making services merely available, however, is not sufficient for populations who have been marginalised and have difficulty engaging with services. Involvement of Inclusion Health ‘target populations’ in research is essential to understanding how to improve services and policy and to reduce inequalities.
Our Research
We reviewed the evidence for health problems faced by Inclusion health target populations and ‘what works’ to improve them. To help interpret our findings and to make recommendations for research and practice, we involved a group of people with experiences of homelessness and social exclusion through an engagement workshop. We used an array of participatory methods to stimulate the conversation and to ensure that participants felt that they were respected co-producers of the project. This research will be published and will also inform other projects on Inclusion Health. We received unanimously positive feedback from participants:
“The buzz generated throughout the day was invigorating. Enforces that we are on the right track. Really enjoyed the 'Inclusion Health' exercise.”
“The day was extremely informative and interesting. Enjoyed it all.”
“Very friendly. Very informative. A sense of being 'part of'. Complete respect. Care and support.”
Themes
Patient and public involvement
People
Serena Luchenski
Rob Aldridge
Andrew Hayward
Collaborators
Dr Nigel Hewett, OBE, Medical Director of Pathway
Dr Nick Maguire, Psychiatry, University of Southampton
Dr Alistair Story, TB Find and Treat Service, University College London Hospitals
Groundswell, a London-based registered charity which exists to enable homeless and vulnerable people to take more control of their lives, have a greater influence on services and to play a full role in our community (www.groundswell.org.uk)
UCL Public Engagement Unit
Impact in research
- Blood pressure and incidence of twelve cardiovascular diseases
- Blood tests for the early identification of Alzheimer's Disease
- Breaking records: Using health records to explore antibiotic prescribing practice
- CALIBER cardiovascular disease prevention projects
- Cognitive workload of health technologies
- Heterogeneity of cognitive decline in dementia: taking into account variable time-zero severity
- Infection Response through Virus genomics (ICONIC)
- International comparisons of 'big' health record data: application to cardiovascular diseases
- Investigating adverse effects of psychiatric drugs through data-mining of electronic health records
- KConnect
- Laboratory-confirmed respiratory infections as vascular triggers
- Large scale omics data integration for biomarker discovery, drug repositioning and screening for new therapeutic targets for Alzheimer's disease
- Lipids and cardiovascular diseases in CALIBER
- 'Nothing about us, without us.' Involvement of Experts by Experience in Homeless and Inclusion Health Research
- Prognosis Research Partnership
- Reactivation of varicella zoster virus and vascular outcomes
- Real-time detection of influenza outbreaks in hospitals: demonstrating infection response through virus genomics (ICONIC)
- The prescription-persistence cascade in cardiovascular disease-an opportunity for big data research
- Tuberculosis in migrants
- Video Observed Therapy for TB – The world’s first randomised controlled trial of smartphone enabled “Video Observed Therapy” to support patients to complete tuberculosis treatment