Patient and Public Involvement
Patient and public involvement (PPI) is research carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them (INVOLVE 2016). Involving patients and the public in research is key to ensuring all aspects of research are relevant and accessible to the community in which the research is directed.
At ICTU we aim to involve patients/the public at all stages of the research cycle. There are many ways people can be involved: determining relevant research questions; being part of a team applying for funding for research; advising on the design of trials; ensuring patient information materials are clear and accessible; being a member of a committee or group to guide a piece of research; directing the communication of results; influencing the way research findings are put into practice and evaluating the impact of research.
We value the insights patients and the public provide us with to enable us to design and implement good quality research that will be understood and well received by patients.
ICTU researchers and the public and patient representatives they work with are enthusiastic about the many benefits PPI brings.
Healthy Start Happy Start
(Preventing enduring behavioural problems in young children through early psychological intervention)
Erin Bibby (HSHS Parent Representative)
“As a Parent Representative for the HSHS Study Advisory Group and Trial Steering Committee, I am able to observe a clinical trial in action from its very beginning, through its successes and more importantly over any hurdles it faces. I have listened, learned, questioned, had my opinion valued and taken a full and active role in the progression of this important trial. A trial that will hopefully change the lives of many families in the future.”
Prof. Paul Ramchandani (HSHS Chief Investigator)
“We have worked closely with parents and other members of the public throughout this research study, and in a number of different ways. It has made a real difference to the way we have approached things, and to key decisions along the way. I think that this has led to the successful running of the study, and it’s been fun.”
Rachael Ryan (HSHS Research Assistant)
“It has been fantastic to create and work with our HSHS Study Advisory Group. As the trial has developed, so has the influence of the group. We developed their suggestions around recruitment, engagement, communication and how to enhance our participant’s journey. It has been invaluable to this trial.”
(Pharmacokinetic and Clinical Observations in People over Fifty)
Memory Sachikonye (POPPY Patient Representative)
“My experience as patient rep on the POPPY study has benefited my learning about research. I was involved from each stage of the study – from design, recruitment and analysis to production of easy to understand patient information. My role is to bring and take back issues directly from the community. I love seeing my name acknowledged at conferences and presentations.”
Prof. Alan Winston (POPPY Co-Chief Investigator)
“The POPPY study is assessing the impact of ageing in people living with HIV in the UK and Ireland. Patient and public involvement has been crucial to the success of the POPPY study in numerous ways. During the design phase of the study protocol, input into concerns people living with HIV have regarding ageing allowed many aspects of ageing to be incorporated into the study design, which may otherwise not have been included in the study procedures. More recently, patient and public involvement has assisted in disseminating findings from the POPPY study to wide audiences in non-scientific terms.”
Laura Burgess (POPPY Clinical Trial Manager)
“The POPPY study aims to look at ageing in people with and without HIV infection. Patient and public involvement has been key to not only developing patient-friendly information sheets but also to how study information is verbally communicated to participants during recruitment. In order to answer the research question, both people living with HIV and HIV negative volunteers were enrolled. Patient and public input has been vital to developing recruitment strategies and publicising the study through advertising materials such as posters, leaflets, study website and social media as well as ensuring that study results are made accessible.”