Print This PostWhat on earth is a Public Advisor Researcher?!
Well, that would be us, Emma and Sue, and it has taken us a while to get to grips with what it is, too. The “public advisor” part is sort of straightforward – to provide a lived experience perspective of the reality of navigating health and social care services and dementia support. It was the “researcher” element that was the bigger learning curve. We work alongside the academic team to shape topic guides and questionnaires for research projects, help recruit appropriate participants, carry out interviews and assist with data analysis.
You both work in the NIHR Policy Research Unit for Dementia and Neurodegeneration at Queen Mary University of London. What made you a good fit for a PAR role in this team?
Emma – I was a science teacher at a sixth form college in Liverpool when I noticed changes in my Mam’s behaviour. She was struggling to find words, which wasn’t immediately alarming, as she was living comfortably on her own with her labrador and a nice circle of friends. She then started struggling with mobility, too. It was a long road from there, starting with trying to get a diagnosis. Dementia hadn’t really crossed my mind as I only really knew about Alzheimer’s and Mam didn’t seem to have any problems with her memory. Mam was eventually diagnosed with frontotemporal dementia (FTD) and within 18 months had very limited mobility and became non-verbal, dying 12 months after that. We encountered lots of inequalities: Mam lived alone in a small village in Yorkshire where very few health and social care workers had encountered someone with FTD. I learnt a lot during that time about the difficulties not only in getting a diagnosis but also finding the right care. I really wanted to use the knowledge I’d gained to try and make a difference.
Sue – My background is in the arts. I ran a theatre for many years, producing shows and mentoring the upcoming generations of theatre makers. I’m also a trained Family Celebrant. My Dad had Alzheimer’s and caring for him was difficult, complex and heartbreaking. Eventually, there was no choice but full-time residential care, which brings a different but equally challenging set of barriers. I also had power of attorney for one of my best friends who was diagnosed with Parkinson’s disease and Lewy body dementia. Some of my previous caring skills helped with this, but it also took me way beyond what I thought I knew and how I thought I could help him. Most of the time it was just terrifying! Like so many carers, it’s been a painful journey of discovery, one I have found challenging but couldn’t not do. Now I find that stands me in good stead for my current role.
What are some common misconceptions about your role?
We had no idea what a Public Advisor Researcher (PAR) was or what the job would entail. All we knew (or hoped) was that we could use our lived experience to have an influence on future care for people in similar situations to us. We think of it as a bridge between public advisors and researchers and attend events as both!
However, we often find that other public advisors see us as only researchers. They seem to forget that we are still caring for people and feel that we are no longer able to give the lived experience perspective. We’ve gone to the dark side! But we definitely don’t see ourselves as academics. We are still being trained as researchers and the process of learning is ongoing and eye-opening.
What can Public Advisor Researchers bring to a research team?
A complementary perspective, we hope. We want to focus on the realities of accessing services and ask questions about how the research is going to make a difference. We can also identify jargon and ensure that we’re asking questions in a way that makes sense to people who aren’t specialists. We can empathise with the anxiety, frustrations and anger that come with illness and trying to find the right support. Sometimes it’s about considering what the researcher is looking to achieve with a piece of work and how we can support this. In every project, our lived experience is vital and central to what we can contribute.
What have been some of the challenges of the role?
Not having an academic background is tricky – like any workplace, universities have their own acronyms, language and computer systems. We’ve often questioned how we can fit in, be relevant and make a genuine contribution whilst still being carers. How can we stay confident enough to speak up when we don’t understand something or disagree with a point being made? We only work one day a week, so it took time to get to know the team and feel like one of them. Arranging interviews can also be difficult as not everyone is available on your one day, and taking a day’s holiday means you are away for almost two weeks.
The emotional rollercoaster of being a carer hasn’t stopped, either. During our first two years in the role, we have both lost loved ones and had to step up as situations have got progressively worse. When doing interviews, we’ve found that other people’s stories can resonate in unexpected ways. We might share their experience, but we need to be the professional in that moment and not intervene or fall apart – just ask the questions and listen.
What has been your proudest moment so far?
Sue – There have been a few. A real milestone for me was the first time I felt that I had properly contributed to a meeting. I saw that what I was saying led to changes in how a project was shaping up, and one of the team came to tell me how useful my suggestions had been. It was like the public advisor and researcher had come together and suddenly made sense to me. It’s also pretty cool to be named as a contributor on a paper.
Emma – For me, it was speaking at the 6th Annual Liverpool Dementia & Ageing Research Conference about our experience as PARs. We were quite nervous about speaking to a room full of academics and health care professionals, but the response was very positive. People wanted to hear our stories!
How can early career researchers support PARs working in their teams?
Making them feel welcome and valued is a good start, and it’s important to be clear on the specific input you are looking for. Try and recognise what practical or professional skills they already have and identify where some training might prove useful. These probably sound pretty basic but, in any new job, you can feel out of your comfort zone, so the basics can matter quite a bit. An early career researcher and a PAR can form a great partnership, both bringing their unique skills and insights to enhance a research project.
Emma Williams
Sue Williams
Authors
Emma Williams and Sue Williams are Public Advisor Researchers at the University of Liverpool. Both came to dementia research through their personal experiences of supporting family members living with dementia and related conditions. They now use that lived experience alongside their growing research expertise to help shape dementia research, contributing to study design, recruitment, interviews and data analysis.
