The NIHR Imperial Biomedical Research Centre (BRC) encourages the participation of patients in biomedical research studies, involves patients and the public in the design and review of research projects, and advocates the value of clinical research. It coordinates these activities through the Imperial Patient Experience Research Centre (PERC), a multidisciplinary group of clinicians, public health specialists and social scientists who promote active communication between patients, researchers and clinical staff to address real problems, thereby improving the quality of healthcare and enhancing the impact of our translational research.
By bringing together academic expertise in epidemiology and public health with social science, particularly anthropology, and nursing research, we can address important questions relevant to the work of the BRC. These include how research participation affects patient experience, how personalised medicine translates into patient pathways, and inequalities in participation. We use methods including ethnography, surveys and routine data analysis to gain a deep and balanced understanding of how research translates into patient benefits in the real world.
We work to understand the validity of different approaches to measuring patient experience, exploring the best ways to use the results of surveys and developing new methods for gathering and analysing patient experience. We carry out in-depth statistical analyses of data and feed the results back to NHS service providers to help them improve.
We are also interested in how the experience of patients and their relatives changes over the course of treatment, and the impact of research on this ‘journey’. For example, for breast cancer patients we engage in various initiatives to help women navigate their treatment, including an experience-based co-design approach, and pathway redesign. This helps patients understand the next steps in their care.
Patient and Public Involvement & Engagement (PPI/E)
We aim to increase patient and public involvement in the work of the BRC, including the following:
- We established the NIHR Imperial BRC Patient and Public (PP) Research Panel
- We offer training and support on patient and public involvement in research
- We showcase our research regularly and support public engagement events, including the Imperial Festival
- We chair and host the Imperial and Partners Patient and Public Involvement (PPI) Research Forum with PPI representatives from North West London
- Our Patient Advisory Panel – patients, carers and families – provides strategic advice to the BRC and oversees the implementation of patient and public involvement in the different Themes
- We have developed policies and mechanisms for recognition and reward of those who devote time to PPI/E activities
Evaluation of our activities
We include process evaluations in all our activities, gathering systematic feedback from patients and researchers. We review the work of the Patient Advisory Panel periodically and work with partners on national evaluations, such as PPI in the national 100,000 Genomes project. Our “ethnographer in residence” conducts in-depth research into how ongoing, embedded patient involvement throughout a research process influences its quality, the benefit to patients and the uptake of any resulting innovation. We explore how patients, GPs and hospital researchers can ensure continued participation in research and high quality outcomes and experience.
PERC is funded primarily by the BRC, with additional funding from Imperial College Healthcare Charity, the Royal College of Psychiatrists, the NIHR Imperial DEC, the West London Genomic Medicine Centre and the four NIHR Health Protection Research Units (HPRUs) at Imperial.