Reflections on conducting inclusive, participatory research in NHS settings

Dr Roisin Mooney, Project Manager and Postdoctoral Researchers in the CHiMES Collaborative and Co-Principal Investigator of the Co-Pact study, outlines her thoughts on important considerations for inclusive research, based on her experience.

Dr Roisin Mooney (centre) with participants and researchers at a Co-Pact study exhibition
Dr Roisin Mooney (centre) with participants and colleagues at the Co-Pact photovoice exhibition.

The first experience I had of recruiting a marginalised population to NHS research was in 2012. I was a research assistant recruiting South Asian people who were experiencing kidney failure to take part in focus groups around their understanding of depression. Since then, I have worked on a range of multi-centre NHS projects, spanning several different methodologies, including, interviews, focus groups, questionnaires, medical device trials, photovoice and co-design.

Roisin MooneyAll my work has not only sought to combat ethnic inequalities but has also concerned different aspects of mental health which is highly stigmatised in many communities. Below I share, a few key reflections around what I consider to be important in promoting inclusivity, based on my experiences.

COMMUNICATION

When I first started working in research, language was perceived to be the biggest obstacle to inclusive research. There were many initiatives that employed professional services to translate materials such as participant information sheet with the ambition of recruiting more diverse populations. However, many of the translations were of university standard language, and not accessible to populations they sought to serve, often the local dialect was different, or there simply weren’t equivocal terms.

“We need to do work on…building trusting relationships, to meet people where they are and find out what their barriers to participation are, then addressing them together.”

Equally in some urban areas, there were so many different languages spoken by minority populations it was impossible to cover them all. It is important to budget for translation and do so in collaboration with the relevant population to ensure that translations are accessible and accurate. However, we need to do work on getting people through the door first, on building trusting relationships, to meet people where they are and find out what their barriers to participation are, then addressing them together. Often, language isn’t the only barrier to taking part in research, so simply translating materials, won’t automatically result in the recruitment of diverse samples. For examples for people with housing challenges or complex caring responsibilities, research is not going to be a high priority.

AUTHENTICITY

The term ‘PPI’, or patient and public involvement has increasingly become mandatory in many spaces, on grant applications and ethics forms for example. This means that the involvement of the public in research may sometimes seem, tokenistic, to tick a box, or consult on a process, rather than being truly collaborative.

There is a lot of mistrust amongst marginalised populations, who have suffered health inequalities and felt used by researchers.

There is a lot of mistrust amongst marginalised populations, who have suffered health inequalities and felt used by researchers. As a researcher it important to be open and transparent, not only about what you can do and what you hope to do, but also about what you can’t do. To build trusting relationships, and work with people as equal partners, sharing power, and acknowledging the importance of the different experiences everyone brings to the table. This can range from including people with relevant lived experience as co-applicants to sharing a meal with participants after a focus group.

IMPACT

I like to consider impact using the question, ‘what difference has this made?’ This incorporates not only the journal articles and scientific innovations, but also the individual impacts, the impact on the participants, on the researchers, and on the people who interact with the data and results. Many people take part in research because they want to make a difference. In research on mental health and marginalised groups there is a lot of trauma. People choose to share their trauma, so that other people do not have to experience the same thing.

People choose to share their trauma, so that other people do not have to experience the same thing.

It is important to manage participant’s expectations around the timeframe within which change can happen and to allow them to understand the impact of their contributions. Many of our photovoice participants have reported enjoying sharing their experiences, hearing of other peoples’ experiences, and subsequently have remained engaged in different forms of research. Creative participatory methods have huge potential to engage people differently and have been found to be particularly impactful amongst people from racialised populations.

Above all, I think it’s important to be led by our participants and operate with curiosity. Many of the populations that I have worked with relish the opportunity to share their story, and to feel heard. As researchers, we need to keep working to tailor and create opportunities for people who have traditionally been excluded from research to share their stories, and ultimately reduce health inequality. 

 

Published: 27 March 2024
Last reviewed: 11 April, 2024