4 March 2022
Adele is a public contributor who, since 2014, has advised researchers and healthcare professionals on a range of topics. She has worked with a number of organisations, including People in Health West of England, the West of England Academic Health Science Network and the National Institute for Health and Care Research Applied Research Collaboration West (NIHR ARC West). Here Adele reflects on her journey and provides valuable suggestions for anyone considering public involvement.
Before starting my public involvement journey, I was in Education. I was also a carer for my Mum, as well as supporting my late partner with increasing ill health. As a result of some problems with the appointments system of our hospital trust, instead of pursuing complaints, I offered my services to help make a difference. That has been my main motivation ever since.
The trust invited me to talk to their board about my experience and invited me to join their members’ forum. I began with helping to develop and trial an observation tool that hospital staff could use to evaluate the care of patients who do not easily have a voice, such as those living with dementia or the after-effects of a stroke. This was followed by interviewing carers of patients living with dementia to inform hospital care.
I was encouraged to apply for a place in the People in Health West of England’s strategy group, laying the foundations for everything that followed.
I’ve been involved in many different areas, including genomics, public health, end-of-life care, paramedics in general practice and ways to improve the prevention, identification and treatment of cancer. Activities have included workshops, meetings, playing a giant healthcare version of Monopoly, helping to make documents easier to understand and being a practice patient for staff consent training.
So, what has been expected of me as a public contributor? Obviously, to be willing to give my perspective, to offer my lived experience and considered opinions. But also to be myself, to bring to the table commitment, an open mind and readiness to listen and learn.
The extent of patient and public involvement (PPI) has developed over the last eight years. Now I’m seeing the public voice embedded in decisions further upstream. When I first started on a national research prioritisation panel, we helped recommend which proposals went forward to be considered for funding. Now we are also encouraged to suggest topics for research at the very beginning of that pathway.
After eight years of being a public contributor, I recognise that I am constantly building on my experience and gradually taking on more strategic work. I am also adapting to new ways of working, including attending meetings online. Because of the COVID experience, public involvement meetings are now often virtual, rather than face-to-face – and I welcome the different ways of communicating.
I’ve learned so much through my public involvement experiences. As well as understanding how research works, I’ve also seen how much the public voice is valued – and how valuable it can be. My experience has taught me that anyone can play a part in research, but that it’s vital that patient and public involvement (PPI) is meaningful. And, importantly, that it’s alright to ask questions!
The highlights of my experience centre around making a positive contribution to research and healthcare. For instance whole genome sequencing has become part of normal service, and patient-facing materials for the Genomics Service are easier to read and understand because of my input. A county-wide rollout of an atrial fibrillation intervention that I helped to shape resulted in positive changes to my own annual health check.
I’ve seen positive change in care on hospital wards, following the use of the tool I worked on. Practitioners have used my perspective to shape their conversations about Emergency Summary Care Plans. I’ve helped researchers evaluate the impact of their PPI in a more informed and structured way. And being on a national prioritisation and funding panel has felt like a real honour.
Doors keep opening. I’m now in more strategic waters with Public Health. I’m also helping to deliver courses for researchers. I’ve joined a new service-user group with a leading hospice charity and, with training, I’m getting to grips with some of the technical side of research.
My advice to anyone thinking of getting involved in research is to give it a go! It’s well worth it. You might find it easier to start with having lived experience, but I suggest that people don’t just sign up to offload about mistakes that have been made in the past. Public involvement is about helping to make a positive difference, whether to research, the researchers or people’s lives. Don’t be nervous – there is always someone available to help you along the way.