In research Patient and Public Involvement is defined as “research carried out with or by members of the public, rather than about or for them”.
The main question people might ask themselves is ‘Why do we need patient and public involvement in research?’ For me, it comes down to three main reasons: to enhance the quality, improve the significance and increase the impact of research.
There are many different stages of the research process (as illustrated above), and PPI contributors can get involved at all the different stages of this cycle. Taking the three reasons I mentioned above into account, I believe that PPI contributors are most important in the Identifying & Prioritising, Undertaking & Analysing and Dissemination & Knowledge Translation stages of research.
PPI can enhance the quality of research. If contributors are involved in the Identifying & Prioritising process, it can highlight issues that are important to patients, carers, people with lived experience and members of the public. Without any PPI input, researchers risk focusing all their efforts on areas that patients consider to be irrelevant. However, as PPI representatives can bring a different perspective to the study, it can result in better research and can help prevent poor research questions.
PPI can improve the significance of research. Designing and using methods that participants are more likely to engage with, can help reduce research being wasted. Involving those with a ‘lived experience’ also enables researchers to access a fuller understanding of the condition being studied and may help generate more meaningful research rather than conventional research. During data analysis, PPI contributors can highlight the findings that are relevant to their community and help researchers interpret their findings.
PPI can increase the impact of research. People with real lived experience can help to communicate study results and explain their importance to other patients, carers, families and organisations. PPI contributors can play a key role in improving the legibility of research proposals and data results and are able to help share the findings with people from a non-scientific background. PPI representatives can contribute to all stages of the research cycle to help improve outcomes from a research study and ensure they are relevant to patients, families and members of the public.
All things considered I believe, that actively involving patients and the public in research is good practice. It leads to research that is relevant, better designed, with focused outcomes, and clearer results.
This blog post was written by Alison Hyland. Alison lives with Recessive Dystrophic EB and is about to begin her second year of university in DCU where she studies Genetics and Cell Biology. We were delighted to welcome Alison to DEBRA Ireland to work as a Research Assistant over the summer months this year.
The contribution Alison has made to the Research team’s work has been invaluable as they have been able to gain the perspective of someone living with EB throughout the work that they do – one of the huge benefits of PPI. We believe that Alison, and everyone who lives with EB or cares for someone with EB, are the real experts of EB as they have to live with it every single day. We are hopeful that going forward we can involve our families in research more and make sure that their voice is heard throughout all of our research activities. We will be looking for volunteers to join our PPI panel, known as the ‘EB Expert Panel’, over the next few months so please get in touch if you would like more information.
If you would like to learn more about having your voice heard in research then please contact our Research Officer, Sarah: [email protected]
If you would like to read more about Alison’s story then please click here.