Case study: Why I am championing research: Simon’s story

Please tell us a little bit about yourself and your experience of health research.

My name is Simon Porges and I live in Hove, East Sussex. I have recently become a Research Champion at University Hospitals Sussex NHS Foundation Trust and I am a Patient Representative on the Queen Victoria Hospital R&I Governance Group. Also, I recently took part in the Janssen COVID-19 vaccine trial at the Royal Sussex County Hospital in Brighton.

What motivated you to become a Research Champion?

I worked for a major pharmaceutical company for 32 years, so I have some knowledge about research from the pharmaceutical industry side. I also had a significant illness four years ago and when I left my job last year, I wanted to do something to benefit others by using my experience of being a patient and my knowledge of working in the pharmaceutical industry.

There has never been a time when health has had so much attention. People who go into research can have the biggest effect as you can discover new treatments and make a big impact. I am a school Governor and I would love to hear students in Sixth Form say that they want to be the next Chris Whitty. My aspiration for young people is that they want to study medicine, biochemistry, or nursing, or whatever route enables them to work in research. So that is why I was interested in getting involved and being a Research Champion is the first step.

What activities have you been involved with as a Research Champion and what difference do you feel they make to others and to research?

I had the opportunity to review a study on hydration in end of life cancer treatment. This is something I have experience of as a carer. I appreciated being able to input into this study and share with researchers my experience of what is going through a relative’s mind at the time and what is important to them. A researcher spoke to us at a Research Champion meeting about a midwifery study looking at the effect of an expectant mother being assigned one midwife or having contact with midwives on a rota system. I am also going to start doing plain English summary reviews for the NIHR Research Design Service South East.

How has being a Research Champion benefited you and how have you been supported?

Being a Research Champion has helped me understand more about the research process and how it works in the NHS. Linda Folkes who runs the Research Champion programme is always available and other Research Champions have been helpful and I am learning much from them.

Is there anything else you would like to tell us?

Often you can make positive changes when something big happens and in recent years there has not been a bigger external event than COVID. It would be great if we can change research from being something people fear to something people love.