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Community research: who’s in control?

5 October 2021
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6 min read

Can health research be more equitable, and enable local residents to lead the research agenda?

There is research fatigue and a growing mistrust of research practice. Increasingly, people want to be involved with setting the research agenda about their health, to be centred on issues which matter to them.

One of our commitments at Impact on Urban Health is to create more inclusive models for generating insight. We don’t just want our research to capture the lived experience of the communities we support. We want the voices and experiences of people living in our place to be integral to the design and delivery of both research about health and the health interventions we fund.

That’s why we partner with organisations like TSIP who focus on community engagement and place-based working. They collaborate with community researchers; people who are passionate about their community and have a deep understanding of the health challenges in them.

For example, community researchers working were able to speak to many residents in Southwark and Lambeth, including a high proportion of Black people, about their experiences adapting and coping during the COVID-19 pandemic

As a result, we’ve also partnered with TSIP’s spin-off research hub, Centric. Centric works to empower diverse communities of colour across the urban landscape and upskill its researchers to do more than just research.  

In collaboration with TSIP and Centric, later this year we’ll be publishing a literature review of community-based research practices and their impact on improving health. Ahead of that, Louise Mousseau, Portfolio Director at Impact on Urban Health spoke to Shaun Danquah, Founder of Centric about community research and health inequalities.

 

Louise:   

Shaun, tell me a little bit about why youstarted thinkingabout community research as a model?    

 

Shaun:   

I first started to think about community research as a model when I was a PhD student. It dawned on me that there was this significant gap between academia and community. As a “so-called ‘academic”’, I was involved in a lot of discussions about community, what itlookedlike and what it is, but there was no connection with the community. I thought to myself that I needed to do something to close that gap becausethere’sa lot of theory and discussion without any real people in the room.   

When I left the academic sector, I joined TSIP and started looking at some of the projects it was working on, realising I needed to do something about this. I wanted to build a community research model that engages with real, local people and can get areal-worldperspective on the agendas and issues that are being spoken about in theory.   

The community has a lot tosay,and they understand the nuance and the locality, but we needed to give them the skills to carry out research. We got in touch with Impact on Urban Health, received and built a training and upskilling package to train up local people in Lambeth and Southwark in quantitative and qualitative analysis. That was stage one – identifying that there was this clear gap between academic institutions andcommunities and understanding how to bring those two worlds closer together. 

 

Louise:   

You’vedone a literature review as part of the community researchers’ training, and the community researchers also did interviews with other organisations working on participatory methods to varying degrees. Was there anything that was unexpected about that process? 

 

Shaun: 

There are a lot of literature reviews written in which there are no community voices. They are always very theory-heavy with no regard to real people, sopart of that method was to create documents and publications that contain a real voice.   

We are disrupting traditional ways of research in a way which I believe can help prevent the alienation often felt by younger generations.

Marcus Tayebwa TSIP community researcher

What surprised me was how much people whoweren’ttrained in academia or come from academia have to say on these issues. Ishouldn’thave been surprised, but it was very refreshing to see how much the community had to say about things that were already being talked about in academia.   

One of the first things I spoke about in the literature review was research extraction, especially the parachute model, where institutions go into communities, take juicyscoops,and leave the communities with nothing. The community researchers and the community had a lot to say about it. I set out to teachthem,but they had more to teach me about their issues and that was constructively surprising.   

 

Louise:   

I guess that really speaks to why it’s important torecognisethat academia isn’t the only holder of knowledge.  There’s lots of different ways to produce knowledge and insight. 

 

Shaun:   

The other refreshing learning for me, in every aspect of the literature review, was that the community researchers hadreally importantthings to say. From extraction, the importance of partnerships, to ethics; they knew a lot about the sensitivities and thedosand don’ts, more so than some of the academic institutions.That’swhy from that literature review I started to think a lot more about reimagining and rethinking ethics because it’s done, but it’s never really done with the community or in partnership. To me it was a massive gap.   

My prior experience had played into that, because during myPhD, I failed my ethics panel about five times. The reason why I failed was because amiddle-classcommittee didn’t understand the nuances I was trying to get at, and it was almost worlds apart from what they were used to. They didn’t understand how I knew the people I was interviewing and engaging with – they saw it as quite risky anddifferent,and it really showed me the disconnect between academia and the community I was in.   

Louise:   

We need academic practice and rigour, but it feels like there’s bridging to be done to bring that rigour and community insight together in new models. What do you think about that? 

 

Shaun:   

It’san excellent point, I discuss this in the literature review.It’sthe importance of equitable collaboration, a sense of shared equity around the table. Sometimes what you find is thatit’sa bit heavier on the scales of academia rather than community. As you mention,it’sstill important that we have the academic piece because of the rigour but what I allude to in that lit review is that it just needs to be a bit more balanced.It’salso not about having people at the table, it’s about shared equity. 

I have seen how information can be unreachable when others have the power to decide what is best, what is correct. I see now how, as a community researcher, when the information is in the hands of people who belong to and are part of the community, we can connect truly, empathise, and listen with attention about the real problems that arise in the daily lives of others.

Danna Michelle Quinones Rodriguez TSIP community researcher

The inclusion of community research in health research is a growing practice and is integral to achieving health equity. Over the last year, we’ve already seen the model change – from the original Gehl Foodscapes project to the COVID-19 lived experience research that informed our COVID emergency fund

There’s more to be done, and we’re pleased to be working with TSIP and Centric to drive the model forward.