A literature review for more equitable community research

Why did we write this literature review?

Historically, health research has not considered the experiences of Black people and people from other minoritised ethnicities.   

That’s why, at the start of the pandemic, Paul Addae and I began formulating the ideas that are now in this literature review. Our aim was to describe how community research could and should consider voices that are too often unheard by health researchers in urban areas.  

Our approach builds on the experiences of people within communities; people who have survived in a landscape fraught with disadvantage and rejection, which has been compounded by a lack of representation in health research.  

With that approach in mind, this literature review covers four areas: 

1. Extractive approaches and ‘parachute’ models of research

The ‘extractive’ or ‘parachute’ model refers to researchers arriving in communities to conduct research and then taking that research back to institutions with little or no follow-up with the communities.  

The approach to research can have negative long-term effects by causing communities to feel cynical and distrustful about the effects of research.  

2. Mapping existing community research models and programmes

We conducted a mapping and scoping of projects run by both large-scale research institutions and grassroots organisations across the UK that work with or employ citizen scientists, peer or community researchers, research champions and others. 

We noticed that inequalities are reflected within fieldwork research practices. Simply put, the very ethics of research reflect inequalities in our communities.  

 3. Rethinking research ethics

We want to challenge and rethink those ethics. The concerns of the community should be listened to and communities should be able to play a role in how research ethics look, especially when that research affects the communities themselves. 

We have applied this new model of listening, ideating, conveying and continuous looping to an array of projects, including working with communities to gather insights about Covid-19, on air pollution and medical scepticism.  

4. Recommendations

We want to make sure that when health research is carried out, communities are an equal partner and are not left outside the room to observe as only as participants. The process should be rigorous and robust, and developed alongside people from the community. Simply put research should be developed by communities for communities. 

This literature review includes twelve recommendations for funders and researchers. These recommendations range from how researchers can take an inbetweener approach with communities, to how to foster collaborative working environments and support partnership sustainability to promote co-ownership of research. 

This approach to carrying out research with communities has immense potential to generate more equitable, insightful and accurate insights.