Meet Anna: using lived experience to shape better research

What made you want to get involved in research?

I worked for 30 years in homelessness, substance misuse and mental health, which got me interested in health outcomes for seldom heard groups. Later, I cared for my parents who died in 2021 – my Dad had dementia and advanced prostate cancer and was being treated under a frailty pathway. My Mum had atrial fibrillation and a pacemaker, was registered blind, had arthritis, osteoporosis, chronic pain and limited mobility. My Dad had increasingly frequent emergency hospital admissions, and several falls both at home and in hospital. They were being looked after at home by a large number of clinicians and social care agencies, including GP surgery, geriatrician, Admiral nurse, domiciliary care agency, reablement team, community matron, occupational therapists, paramedics and later a social worker was involved when my Dad went into a nursing home 8 months before he died. I remember feeling totally overwhelmed trying to manage all the different appointments and phone calls, and really feeling like none of them were speaking to each other so I had to fill in the gaps. I got involved in research to try to improve things for other people, and to feel that my parents’ experiences could do some good in the future.

What was your first pathway/introduction into PPI?

I was at a conference in Bristol in about 2016 and Mike Bell (the former PPIE Facilitator at ARC West) handed me a People in Health West of England pen – that was it! I quickly became involved with ARC West and I’ve never looked back!

Since getting involved in PPI with the Applied Research collaborations (ARCs), you’ve been involved in some pretty exciting things. What have some of the highlights been?

Ooh there have been so many! Co-writing the foreword for the Bristol, Somerset & Wiltshire Mental Health Strategy was pretty special, as was meeting Stephen Kinnock, the former Minister of State for Care, at an event held at Westminster by Dementia UK calling for better end of life care for people living with dementia.

I’ve been a public contributor at the NIHR Doctoral Training Camps three times. I’ve served as a lay member on two NICE Guideline Committees, and I currently sit on the Dementia UK Lived Experience Advisory Panel and the Dementia Lived Experience Group at the UK Dementia Research Institute Care Research and Technology Centre at Imperial College London. I’ve spoken at conferences and really pushed myself out of my comfort zone!

How has your time with the ARCs helped you in these other roles?

It’s been the foundation of my experience as a public contributor, and the benchmark to which I hold all my other roles! I think being a public contributor for an ARC gives you such a good grounding as to what good PPIE looks like, it’s a great place to start. It exposes you to so many ways of being meaningfully involved.

You have been a co-applicant on several studies. How have you found that and which approaches do you feel have worked well?

My experiences have all been positive as I have been a totally equal partner in the research, and in some cases have been co-leading the PPIE. It doesn’t matter if you don’t understand every bit of the application – my “expertise” has been around the PPIE plans and the Plain English summary, and other people will bring their expertise to other sections.

You’ve mentioned about how your own experience of being a carer, as well as working with particularly marginalised groups, such as people experiencing homelessness, has spurred you on to work with organisation to help them understand the importance of increasing diverse voices in research. Why do you feel this is so important?

This is SOOOO important. I am often asked to be involved in things as I am an experienced public contributor who can hit the ground running. But just having lots of people like me round the table is no good – there needs to be more emphasis on involving people who have never been involved before. I think mentoring or buddying schemes – pairing experienced public contributors with brand new ones could be a good way to go. The research community needs to think about where opportunities are advertised as a starting point, and how easy it is for people to apply for the involvement opportunity.

What do you feel you have gotten out of becoming a public contributor and getting involved in research?

Sooooo much! Feeling like I have something to offer, meeting many many diverse people and learning so much from them. Growing in confidence and saying yes to scary things! Overall, a great sense of hope at seeing how much diverse research is going on, and the potential it has to improve health and social care.

What advice would you give to anyone thinking of getting involved in research and PPI?

Go for it! YOUR experience, and YOUR perception, is important and is needed. Don’t let imposter syndrome hold you back!