Corina Cheeks has two important roles with the NIHR Oxford Biomedical Research Centre: she is a member of the Diversity in Research Group, a patient and public involvement and engagement (PPIE) group that aims to make involvement in health research more engaging to diverse communities; and she is one of the patient and public representatives on the BRC’s Steering Committee, its main governance and oversight body.
“It’s always been about elevating the voices of people like me, people who probably wouldn’t be involved in research, people who may distrust research. That kind of thing is what motivates me -it’s what I focus on,” says Corina, who is passionate about her role in promoting lived experiences through participation.
“I also want to dispel the unhelpful myths and stereotypes about the culture I come from. I think sometimes there’s a reluctance to ask certain questions for fear of causing offense. Whilst it’s important to be respectful, I’m also of the opinion that the uncomfortable questions are where you can really make a change.”
It was a chance advertisement on a bulletin that first alerted Corina to the concept of being involved in research, through lived experience.
“It was describing how outcomes for Black and minority ethnic groups are significantly worse in a number of healthcare realms. At that time, I didn’t factually know that, but it felt right. I wanted to find out more about this, but I also wondered if there was something I could do to help provide my own lived experience,” Corina says.
“…uncomfortable questions are where you can really make a change.”
One of the most significant projects that she has been involved in is a participatory evaluation of the Diversity in Research Group, led by Joanna Crocker, the Oxford BRC’s Senior Researcher in PPIE. The study asks both the group’s members and researchers to share their experiences of working collaboratively and reflecting upon any issues they have encountered. This work aims to result in a framework that will act as a reference point for researchers and similar groups.
Feedback from some of the researchers interviewed as part of this project has been positive. Corina says: “Often what comes through is that some researchers hadn’t thought in depth about barriers to involvement, for example using wordy language, assuming people can travel to the centre of Oxford or being open about whether payment is offered. So, we feel we have added value there.”
The Diversity in Research Group have run training sessions for BRC researchers, at which they have, as Corina explains, “presented our lived experience and talked about discrimination, disability and general experiences of not feeling as though we’ve been listened to in medical research”.
These events invited pragmatic conversations about how to make real change and have resulted in members of the group advising researchers on individual research projects. “It’s been really valuable to see how they have implemented our feedback. It feels like we’re making a difference.”
Corina adds: “We want to dispel the distrust and misunderstandings that often surround medical research. So, we’ve advised researchers on reaching out to the community, rather than expecting the community to come to them at Oxford University, which for some people is quite overwhelming and nerve-wracking. So, we’ve made recommendations to address that – going to community centres, faith groups and GP surgeries and really making sure that the information is accessible.”
Corina welcomes the way the research community is increasingly seeking the input of patients and members of the public, but says it also benefits those getting involved: “I’ve really seen how PPIE involvement has helped people, it’s helped the medical world to progress and develop. But also, from my perspective, I feel more empowered when I go to my GP, I feel more informed when I see things on the news. I want people to see that whilst there are many challenges, there are also positives.”
Corina, who works in the University of Oxford’s Primary Care department, is one of two members of the Diversity in Research Group, along with Richard Mandunya, who attend the Oxford BRC Steering Committee.
“I am a representative of the community, but I can only speak from my own lived experience.”
Here, too, she says it is essential to have the voice of the patient represented: “There are people who are very experienced in that sphere, who have a lot of insight into the medical and financial side of things, but sometimes the voice of the community or the person who’s living the outcome can get lost. So, it’s important to ask the questions that they may assume people already know.
“But it’s also learning for me to take back to the group. I’m there to take in as much information as I can, and make sure that it’s accessible and transparent. I feel that my goal is to share that information and to be really honest about it.”
Corina has worked with the Oxford BRC’s ethics lead, Mark Sheehan, on ethics questions around PPIE representation, not least the extent to which PPIE contributors are able to speak for the communities they come from.
Corina explains: “I come to Steering Committee meetings feeling like I am a representative of the community. But I can only really speak about myself. I can only speak from my own lived experience.”
What can be difficult for someone in Corina’s position is the challenges being faced and the time it takes to address them.
“When you learn of health disparities and negative health outcomes, you want to the change to happen quickly, but often, this isn’t possible – it can take months or even years to see a project come to fruition. It’s still important to try.”