Stories/Lived Experience
Author: Jamie Howell; PhD researcher, Department of Psychology, Maynooth University
In recent years, health researchers have begun to embrace the concept of patient and public involvement (PPI). Rather than conducting research on or for various populations, we have begun to move towards working with patients and the public by prioritizing their needs and concerns. This allows researchers to learn from those who have lived experience and can help them design research projects which are more beneficial to the population being researched.
I first heard of PPI during my MSc, when my supervisor, Dr Rebecca Maguire encouraged me to include aspects of PPI in my research. Dr Maguire has worked as both a researcher and as a patient advocate, and her expertise has been invaluable to my own research.
Although I implemented PPI into my MSc project towards seeking feedback about my findings from the population my research focused on, I wanted to ensure that PPI was central to my PhD research. I started my PhD, which focuses on the mental and sexual health of gay, bisexual and other men who have sex with men (MSM) in January of this year. I began the project by seeking out MSM to be part of a PPI panel so that my research would be shaped by the needs and concerns of this population at all stages. As MSM are such a diverse population, their individual needs and concerns can differs. I recently had my first meeting with the panel members, which focused on what direction the PPI panel members wanted to see the research take. I found this extremely valuable to my research, as many of the men raised points that I would not otherwise have thought of, even as a gay man myself. Going forward, I now have a better idea of what areas the research will focus on, and how to conduct my PhD in a way that is inclusive to the population being studied.
As a PhD researcher at the beginning stages of incorporating PPI into my work, I was very excited to attend the seminar on Patient and Public Involvement in research hosted by the ALL Institute, in association with the Kathleen Lonsdale Institute for Human Health Research. I found Dr Mark Robinson’s concise explanation of what exactly PPI is very useful, especially for those new to the concept. One of the major benefits of the seminar was that it not only included researchers such as Dr Robinson as speakers, but also patients such as Marie Ennis O’ Connor- who has previously spoken at the 2019 Psychology, Health and Medicine Conference in Maynooth University, and Robert Joyce who is a patient advocate for those living with MS. As well as a growing incorporation of PPI within research, it is refreshing to see patients being given platforms to speak at events such as this seminar as experts in their own right.
Of the various speakers at the seminar, I found it especially useful to hear from Marie Ennis O’ Connor, who spoke from the perspective of a patient engaging with research. She explained that she has recently begun declining invitations to participate in PPI opportunities as they often appear to be tick box exercises rather than researchers genuinely centring patient voices. Marie also discussed how researchers are often guilty of tokenism, and described ways that we can avoid this, such as considering whether we can tell PPI participants how they are adding value to the research and explaining to PPI participants how their concerns and feedback have been considered. Going forward with my own research, I plan to implement Marie’s advice by getting in touch with the men who are part of my PPI panel and explaining how their feedback has been taken into consideration and how it will affect the research design. Marie also gave advice on ensuring that PPI meetings are accessible to all. While my meetings are currently online due to the pandemic- I found it useful to consider that this can still be less accessible to certain people and will now be asking my research participants how I can make it more accessible for them to take part. Having attended this seminar, I am now feeling more prepared to work alongside the people that my research will focus on.
The move towards platforming patient and public voices is encouraging, and seeing more events like the ALL PPI seminar, as well as seeing fellow researchers incorporate PPI into their projects makes me excited for the future of health research.