"Why am I here?" - carer Carmel Geoghegan considers the purpose and importance of Public Involvement work


“Why am I here?” As someone who has been involved as a public/patient advocate for ten years, this is a question I ask myself on a regular basis. Way back in 2013, I got involved in my first ever Public Patient Involvement (PPI) project. Of course it was all very new and mysterious as this was a new concept and also my life prior to 2010 had been on a very different path. I became my mum’s primary carer overnight and lost my dad in a whirlwind battle with cancer. Life is precious and while we are all busy we need to live in the moment and make all our actions count. My life changed dramatically. I returned to education so I could be a better advocate for my mum and, after she passed away, I decided to continue to try and highlight some of the flaws in our health system. Of course this is never easy as you are going up against “the System”, which self protects at all costs.

My first encounters with researchers and the academic world were inevitably quite scary and it took some time to build my confidence and my ability to engage with all the various stakeholders round the table. It also took time to find my voice, as I had envisioned it. Joining this new world of research is a great move to allow me to help make changes and to ensure that the most important voice at the table is heard, that of the lived experience, which no other person can represent. Everyone’s experience is different and all are relevant, so when joining a PPI group, it is important to remember that you are there with your own experience but you are also there to represent those who have no voice at the table. Over the past ten years, my life has become a kaleidoscope of experiences, feelings, emotions, learning, meeting amazing people and hopefully influencing some change. PPI work has many facets, depending on the project itself, the individuals involved, where the project is based – at national, European or global level - who the lead researcher/organisation/institution is and what their attitude and understanding is regarding the value of the voice of PPI representatives.

This engagement is very varied and, in my opinion, it is what constitutes good or bad research interactions, which are a vital element of the process. What are the key foundation stones that need to be addressed to secure a solid experience and an output of truly meaningful research?

• PPI representatives should be able to voice their opinions on all aspects of a project/piece of research.

• Engagement should be seen as a continuum of activities and outputs.

• Consistency and transparency should become standard practice in PPI.

• As PPI is the bridge between the researchers and the general public our involvement should be focused on tangible outputs that can enhance life in general.

• There are now a number of well-developed frameworks and guidelines available to use as a reference for building a solid understanding of a working relationship between all stake holders. Our input should include influencing and shaping outputs from the start to the finish, establishing and receiving updated reports on monitoring and evaluation, and holding stakeholders accountable for ensuring consistency in the delivery of outcomes.

• It is important to allocate adequate funding in the project budget for PPI. Though reimbursement for our time can come in many forms, not just monetary: We can be co-authors, co-researchers, co-facilitators, as we also want to be encouraged and facilitated to build our own capacity and to foster a culture of respect and equality so that we can be more effective collaborators.