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.

Levelling Up: welcome news or overly ambitious and unrealistic?

Posted by Chloe Beck, Health and Social Care student, Northumbria University

Before his resignation, Boris Johnson unveiled his flagship ‘Levelling Up’ plan. Hailed as the ‘defining mission’ of his Government, this new plan strives to transform the United Kingdom by increasing opportunities and prospects for the whole population. It aims to shift Government focus onto the so-called ‘forgotten communities’ of Great Britain, through a decade long project consisting of twelve missions that have been given status within UK law. Although changes are now afoot in the Government, both candidates to replace Johnson - Liz Truss and Rishi Sunak - have stated their continued commitment to the policy. It seems therefore, that levelling up is here to stay (for a bit longer at least). But what might this mean for inequality in the UK and are its goals likely to be reached?

Rishi Sunak visiting Yarm in North East England, December 2021

As might be expected with such a bold promise, the Levelling Up plan has been both welcomed, and branded as overly ambitious (Wood and Swift, 2022). Some see the policy as a serious attempt at understanding and reacting to the regional inequalities that exist within the United Kingdom (HM Government, 2022; Wood and Swift, 2022). Supporters view the policy as a sensible plan, with missions that are collective and recognise the links between health, skills, education and the economy (Wood and Swift, 2022). It’s certainly clear that Levelling Up promises some huge and much needed changes to healthcare services and for the population within the UK (including upgrades to hospitals, increased GP appointments, new fruit and vegetable prescriptions to help tackle food insecurity, changes to the school curriculum to support healthy eating, and community hubs to tackle diagnostic backlogs). Whether these changes are do-able in the context of continued staff shortages and already under-funded health services remains to be seen.

The Labour party has described Levelling Up as a rehash of recycled policies (Harari et al., 2022), with others stating that it is too aspirational and impractical (Pope, 2022). It is argued that the policies breadth and scope may make it hard for the Government to maintain focus and could create a scattered approach (Newman et al., 2022; Pope, 2022; Wood and Swift, 2022).

One of the major problems appears to be a lack of long-term funding into the whole Levelling Up plan, with funds only extending to 2030 (Swinney, 2022). Levelling up may not be fully achieved if funds dwindle once 2030 comes around. Calls for Government to extend Levelling Up plans beyond 2030 (Swinney, 2022), to ensure its longevity and successfulness are unlikely to be met, especially in a political environment where short-termism is the norm and where the maximum term of a Parliament is five years (Marsh, 2013). Likewise, critics suggest that an agreement needs to be made between political parties to ensure Levelling Up is not scrapped once a new Government comes into power (Davenport and Zaranko, 2020; Swinney, 2022).

Even despite levelling up actions, differences in productivity between areas within the United Kingdom will likely remain (Atherton and Webb, 2022). This is because different places have different roles within the economy, with London being top of the chart for professional services, and Wales for the manufacturing sector for example (Sykes and Lisle, 2021). Setting area specific goals and targets (Atherton and Webb 2022), and implementing types of spending (Mason 2022) which take into account the specific demographics and economy of an area may help to combat this issue. Though, of course, this local variation may pose alternative challenges due to mixed ideologies and inconsistency with ideas laid out in the original white paper.

Setting aside concerns about feasibility, it has also been found that many disadvantaged areas are not prioritised within the plan (Atherton and Webb, 2022). This demonstrates a lack of attention and care towards the very thing that the plan is aiming to fix: inequalities! Data journalists at The Guardian found that some of the most deprived localities are receiving far less financial support than some of the most affluent areas, with Bromsgrove in Worcestershire receiving £148 per person and Knowsley in Merseyside receiving no money per person for example. This chimes with Rishi Sunak’s comments about redirecting funding away from disadvantaged areas and towards wealthier towns.

Overall, the new Levelling Up plan has both its positives and negatives. It is a clear start at aiming to try and reduce longstanding inequalities within the United Kingdom. However, the extent to which these policies will be followed as they have been set out is unclear, and only time will tell whether it manages to achieve its missions and ‘level up’ the country.

The cynic in me thinks that this push for equity may also have something to do with attracting votes...

Part of our Fuse blog Student Series

The Fuse blog Student Series showcases posts by students who have been challenged to write a blog as part of their studies at one of the universities in the Fuse collaboration, the NIHR School for Public Health Research, or perhaps further afield. The authors may be new to blogging and we hope to provide a 'safe space' for the students to explore their subject and find their voice in the world of public health research.

The views and opinions expressed by the author are those of the author and do not necessarily reflect those of Northumbria University or Fuse, the Centre for Translational Research in Public Health.

Image: HM Treasury, OGL 3, via Wikimedia Commons