Going beyond research to empower involvement and smash stereotypes

Posted by Sheena Ramsay, Professor of Public Health & Epidemiology, (and team: Emma Joyes, Emma Adams, Laura McGowan) in collaboration with Fulfilling Lives Newcastle Gateshead Experts by Experience

The way researchers approach some groups is often not sensitive to or inclusive of their needs. For example, the information can use technical language (such as ‘licit substances’ or ‘quasi-experimental’) which can be difficult to understand and off-putting. This can lead to people not wanting to take part in studies. Which means that new research insights, including changes to practice, can exclude those who are often most impacted.

Over the last two years, we have been working with Fulfilling Lives Newcastle Gateshead and their Experts by Experience Network of individuals with lived experience of multiple disadvantage. We have explored perceptions of services and programmes relating to oral health and related health behaviours - such as substance use, smoking, and diet - for people who experience severe and multiple disadvantage (a combination of homelessness, substance misuse, and offending). From the beginning, the Experts by Experience Network has shaped our work and helped us ensure it is accessible to those we want to speak to the most.

One of the ways that the Network has shaped our research is by helping us to create a video to help reach out to potential participants for our research - particularly people who are often excluded in research studies, such as people experiencing homeless.

Our team worked with the Experts by Experience Network to look at ways to get people involved in the research. We wanted to work with those who had insights into the issues we hoped to study, so that we could communicate the research in a way that would resonate with people. Together, we co-created an animated video as a means of reaching out to people, so they could find out about the research and how to take part.

The infographics in this blog show what we have learnt from this process of co-creating the video and the value of co-production.

Creating a video provided an easy way in which organisations (such as Crisis, Fulfilling Lives, and other providers) and local Expert by Experience networks could share information about the study.

Those involved in creating the video were able to draw upon their experiences to help shape the content. One of the members of the group shared their experience of the process:

“Some of us in the Network feel really strongly about this issue and have personal experience of it ourselves so we were keen to be involved and share our ideas and opinions.”

Another member said:

“I joined this project because my own oral health has been something I've been embarrassed about in the past so I thought I could add something useful to this work.”

We have tried to map out how we designed our video in the image below.

The video has also been shared nationally with a wide range of organisations that support severe and multiple disadvantage groups in Newcastle and Gateshead, London, and Plymouth to promote engagement with policy and commissioners, local authority, criminal justice system, primary care, and third sector organisations. Producing a video was no easy feat, but it was a simple way of sharing our research with people who are pressed for time. You can check out the video below.

 

A clear benefit of engaging with people with lived experience was having their input on how best to communicate our research widely. They provided real-life stories and examples, which helped create the narrative for the video. They helped challenge stereotypes of ways in which people can be portrayed in research studies - this resulted in modifying the images and language used in the video which were much more realistic and sensitive to the people we were wanting to engage. This has helped our research team become more aware of and appreciate the importance of stereotyping and how it can result in putting people off taking part in research.

The benefits reached beyond the research team and the video (the below infographic highlights some of these), as many of the Experts by Experience echoed how involvement has led to them feeling empowered and one member wrote a blog about their experience.

We plan to build on this collaboration as we continue our research and gain further input on findings from our study and next steps.


This study ‘Improving the oral health and related health behaviours of adults experiencing severe and multiple disadvantage: evidence synthesis and qualitative stakeholder research’ is funded by the NIHR Policy Research Programme (grant reference NIHR200415). The video was supported by Newcastle University Engage FMS. The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.