We recently worked with 12 other organisations – including funders, regulators and research organisations – to sign up to a new shared commitment to improve public involvement in research. Public involvement is important, expected and possible in all types of health and social care research. We regularly work with members of the public, who form part of our Public Involvement Network, to develop our work.
Here, Della Ogunleye tells us about her work in public involvement with the HRA and other organisations and how she got involved in Public Involvement Networks.
'It was all daunting in the beginning, attending all these meetings where I sometimes did not understand the scientific terms that were being used.
My first exposure into the ‘world’ of health and social care research came in 2017 at a conference I attended organised by Macmillan Cancer Support. We were away for the weekend and a breast cancer patient was talking about how she got involved in research but did not give any detailed information.
When I got back home, I googled different networks including the National Institute of Health and Care Research (NIHR) to find out more about what they were and what they did. Eventually, after gleaning as much information as I could, I selected the criteria I was interested in (research into breast cancer) and applied to join one of the networks.
The rest, as they say, is history! I’ve since immersed myself in this work and really broadened my horizons but not just about cancer. I’ve learnt and gained insight into other health conditions as well including dementia, diabetes and mental health.
It’s been life-changing, an invaluable learning curve.
Around the same time, I also got involved with various advocacy groups with Macmillan as well as the Improving Cancer Experience (ICE) at St George’s Hospital, in Tooting, South London, where I was treated for my own cancer diagnosis. I also took part in a few awareness raising events with Cancer Research UK and in 2018, I got involved with the National Institute for Health Research (NIHR) Biomedical Research Centre (BRC) at The Royal Marsden NHS Foundation Trust as the Patient Representative Team Lead for artificial intelligence and digital themes.
Enthused by this momentum, I applied to join the National Cancer Research Institute’s (NCRI) Consumer Forum, lending my voice to the impact of treatment and research for various communities, especially Black African Minority Ethnic communities. This was particularly important to me because I felt (and still do) that communities like mine are underrepresented in this vital area of research.
I joined the HRA after simply seeing an advert and applying. My first thought on seeing it was ‘we have a voice; you need to hear us’. And I’m sure my colleagues at the HRA will attest, they certainly hear my voice. I’m not shy in coming forward. My role as a public contributor has afforded me great insight and experience and has given me the encouragement to continue to promote clinical trials and champion the drive to see more diversity in all research.
My journey so far has been rewarding and educational, especially being able to look up to mentors like Jim Elliott, the HRA’s Public Involvement Lead, and Lynn Laidlaw, a longstanding Patient Involvement Network member who has done a lot of work with the HRA.
So far, I’ve fed into ideas for the HRA’s new strategy which is currently being developed and taken part in a piece of work looking at the role of ethics review as part of Think Ethics.
I’ve also taken part in a workshop to mark the HRA’s tenth anniversary and look at priorities and issues in research ethics for the HRA to consider for the next 10 years.
Across all my work in public involvement, it’s early days and we still have a long way to go but we are going in the right direction and I hope my contribution will continue to make a difference.
I’m getting better at deciphering the scientific terminology too!’
Della Ogunleye, Public Involvement Network member.