Public and Patient Involvement (PPI) is about us improving our research, making it better and more relevant through a dialogue with public ‘non-experts’.
By involving the public in what questions we ask, how we carry out the research, and how we communicate the results, we can enrich our work.
In our institute, the Paediatric Infectious Diseases Research Group (PIDRG) has an ongoing PPI programme to explore research relating to infection and immunity in pregnancy and the newborn period. This group was set up by Anna Calvert and Paul Heath, who both conduct research in this area, with a particular interest in vaccination in pregnancy.
Anna and Paul, along with other professionals such as obstetricians and midwives, meet with a group of participants in a local cafe every six months to discuss ongoing and future research, as well as practical issues around conducting research with pregnant and newborn participants.
Anna says it has changed how they think as researchers, and how they work.
We were planning a study on a vaccine against respiratory syncytial virus in pregnancy, and thought safety would be the main factor. However, while this was important, the group also wanted to know about the disease. So it wasn’t just a question of ‘how safe is the vaccine?’, but also ‘how dangerous is the disease?’. This changed how we approached the task.
New technologies in healthcare
Sebastian Fuller is the social science lead for the Applied Diagnostic Research and Evaluation Unit (ADREU), and has a particular interest in public and patient involvement in the development and implementation of new technologies for use in healthcare.
Topics range from the adoption of new point-of-care tests for sexual infections into the NHS, understanding the social acceptability of genetic modification of plants to produce healthcare products in Europe, and investigating social and structural barriers and facilitators to implementing diagnostic tests that can improve patient outcomes in low- and middle-income countries.
ADREU's work in Ecuador focuses on collaborations between laboratory scientists, epidemiologists and local stakeholders to produce new diagnostic pathways for high-risk patients. In the UK, ADREU have set up a Community Advisory Group (CAG) that brings together professionals and members of the public to discuss the direction of new research proposals, develop best practices for informed consent in research, and explore new ways to engage with members of the public on these important issues. CAG meetings are held on an ad-hoc basis at St George’s, University of London. ADREU are always looking for additional members to expand their PPI efforts. Please get in touch to learn more.