Putting lived experience at the heart of national health research
Author: Phil Parkes, Network Coordinator, Expert Citizens CIC
About Me
My Name is Phil Parkes, Network Coordinator for Expert Citizens. For those who don’t know Expert Citizens are a community interest company built by and for people with lived experience. We exist because we care about people and the world we live in. Our belief is that we can make a difference and that everyone has potential. We understand that everyone has an individual experience and treat each other with respect and dignity.
I have been a member of Expert Citizens for 8 years nearly 3 of these as an employee. I have previous experiences of being homeless, I am currently in recovery from addiction (4 years sober) and I have periods of ill mental health
About the research and how I got involved
I initially got put into contact with Dr Laura Goodwin (then of Liverpool University, now working at Lancaster University) around 2 years ago when I was approached to take part in focus groups about co-occurring mental ill health and alcohol use disorders. It was interesting to take part in these, I enjoyed being able to use my lived experience to inform a research project. These were held a series of online meetings with people spread across the UK with relevant lived experience and I met a few interesting people along the way.
From there I was asked to participate more formally as the PPI (Patient and Public Involvement) lead for an upcoming project in this area. That bid was unfortunately unsuccessful, but I still maintained contact with Laura and expressed an interest in working together in the future.
More recently we were successful in being awarded a programme development from the National Institute for Health Research (NIHR) for our research into improving treatment pathways and outcomes for people with co-occurring mental health problems and alcohol use disorders. The longer term aims of this research are to develop and test updated recommendations for professionals, in addition to guidance for service users and their families to better navigate the complex systems.
In the run up to putting in this bid, we ran 2 workshops to develop research priority areas and to understand the positives and negatives of the current treatment pathways available for people with co-occurring problems. Twenty-five people attended these workshops, a mix of health professionals and people with lived experience. We found that 75% of people had experienced the treatment pathway known as serial treatment (alcohol then mental health) and this treatment route was felt by the attendees to be associated with more negatives than the other pathways.
Since these workshops, we have gone onto present our findings to the Three NIHR Research Schools Mental Health Programme. We are also due to present these findings at the UKSBM (UK Society for Behavioural Medicine) on March 28th in Birmingham.
I am extremely proud to be a part of this research and everything that has come from it. In my opinion this shows a movement in the way things are normally done with lived and learned experience working on an even setting. I have every faith that this will prove to be successful, and I look forward to informing you of any future developments.
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