From Patient to Advocate: A patient's journey of research participation and passion for Equality, Diversity and Inclusion

Peter, Clinical Research Facility Patient, Public Involvement and Engagement Member

This week, we spoke with Peter, one of our Patient and Public Involvement Engagement Members, on his journey and experiences of research participation and why he is passionate about Equality, Diversity and Inclusion in research.

"My name is Peter and I live in Brighton with my partner. I was diagnosed with depression and anxiety over 10 years ago. A large part of my 'recovery' has been routed in supporting others, which led me to start a career in the charity sector around the same time as my original diagnosis. My career has ranged from peer support to rolling out HIV and Sexually Transmitted Infection testing during the pandemic. Last year, after working closely with people living with HIV, and feeling empowered by listening to personal stories of how individuals reclaimed their diagnoses, I realised I wanted to use my own lived experience. I decided to take part in an NHS Peer Leadership Programme and I became a Project Lead for Mind’s PeerFest Programme.


Participation in research

"My self-esteem has often stopped me from putting myself forward for opportunities, particularly when I have not felt well or valuable enough. However, I saw that King’s Clinical Research Facility (CRF) was recruiting for the SIGNATURE study for treatment-resistant depression, looking at brain activity in response to ketamine and a non-psychotropic drug. I had heard about the use of ketamine for depression, but I had not read up on it; I was curious to understand how it works and how its effects are measured. I find it frustrating when I am feeling less resilient or less able to ‘work through’ the dark periods of depression and anxiety, and I am open to exploring ways that I can break those cycles.        

"I had a couple of initial calls with the research team, and we decided to delay my start on the study, due to suicidal ideation. Importantly, everyone throughout the study was supportive and welcoming and allowed me space to talk about this and how I was feeling. I had 3 MRI scans as part of the study, and I think it is hard to be fully prepared for the scans, as the machine is very noisy and shakes, which can be disorienting. It can also be daunting to enter a CRF, particularly one attached to a hospital. However, I felt more comfortable once I had visited the King’s CRF a few times. I sometimes struggled to answer some of the questions that I was asked as part of the study. The questions were about how I felt between visits, and about my motivation, interests, and mood, which can vary daily.

Passion for Equality, Diversity and Inclusion

"I recently supported the delivery of a training session for the King’s CRF staff about Equality, Diversity, and Inclusion (EDI). It is important to me to ensure that minority communities are included in research and see themselves reflected in services. There is an age-old mantra that ‘if we’re not counted, we don’t count’ – measures need to be put in place to make research spaces inclusive. We learn a lot about ourselves when we recognise the barriers and biases in place and acknowledge that the involvement of those with lived experience is imperative to making effective change."    

Tags: Patient and Carer Involvement and Engagement - NIHR Wellcome King's Clinical Research Facility -

By NIHR Wellcome King's Clinical Research Facility at 5 Sep 2023, 00:01 AM

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