1 in 4 people experience mental illness each year, yet our understanding of what causes mental health conditions, or the best path to treat them is woefully lacking. At MQ, we believe that it’s only through research that we can change the status quo, and transform what it means to experience mental illness.
But robust research relies on participation – without the views and involvement of those affected we won’t be able to achieve the progress desperately needed.
Sadly, involvement of those affected in mental health research is also falling behind. Just 2% of those in mental health services are involved in research, compared to almost 20% of cancer patients.
Added to that, those that do get involved tend to be overwhelming white, middle-class and female. This was the experience of the NIHR funded GLAD studywhich - whilst achieving fantastic results in terms of number of people recruited – struggled to get the diversity of participants they had hoped for. In fact, a 70% of those recruited fit into the white, middle-class, female category.
So why is participation in mental health research so worryingly low and lacking in diversity? And what can be done to tackle it?
The recruitment challenge
Low investment in mental health research is a well-documented challenge for the sector, and a substantial barrier to recruitment. But there are also other practical barriers and inefficiencies within the system of recruitment which urgently need addressing.
For many, traditional, tried and tested approaches to participant recruitment result in low uptake, retention and lack of diversity of participants. Yet stretched research teams often end up relying on these methods, such as putting up posters around university campuses, or looking for people online using gumtree or Facebook advertising. This can result in a very specific ‘type’ of participant applying – as these methods don’t always reach a very diverse group of people.
There can also be a trade-off between getting the numbers needed vs recruiting a diverse group of people - meaning researchers have to make difficult decisions about which is most important. This is further compounded by other factors, such as pressures on time and resource, or a lack of support to implement new practices in their institutions.
The barriers facing BAME groups
We know that not only are BAME individuals more likely to experience mental health issues, they are also more likely to face discrimination within the mental health system.
In our Q&A with researcher Karim Mitha, whose work focusses on the mental health of people in minority ethnic communities, he explained some of the factors at play for BAME individuals.
His research has shown that social and environmental factors play a major role in the likelihood BAME people will experience mental health conditions. BAME communities are more likely to live in deprived areas and experience discrimination, yet less likely to see positive outcomes from higher education or high employment positions. All these factors contribute to their experience of mental health issues.
BAME groups also tend to face challenges when it comes to recognising early symptoms of mental health conditions - which when added to stigma within the community, and different conceptualisations and language surrounding mental health - can mean they only seek help when conditions reach a much greater stage of severity.
It’s clear that there is a huge amount of work needed to help reduce the stigma surrounding mental health conditions, before many from BAME communities feel comfortable seeking help, let alone participating in research.
Our work tackling the challenge of recruitment and diversity
MQ’s new platform, Participate, which launched in November, is already making waves in research recruitment, with over 2,000 people putting themselves forward for studies in the first few weeks.
But this is just the start of our journey.
We are also part way through a second stage of Participate development, funded by the Wellcome Trust, which is delving into the barriers faced by researchers and BAME groups when it comes to involvement in research.
Our hope is that this work will not only provide MQ with a clear path forwards for how Participate can be improved to better meet the needs of researchers and BAME individuals, but that it will also be the start of a broader conversation around how we can improve involvement, particularly with BAME communities’ needs in mind.
But the scale of the challenge should not be underestimated. If we want to truly have an impact on diversity in mental health research participation, we need to better understand the needs of BAME communities, and implement strategies that are developed with their needs in mind.
These strategies must go beyond the platform that MQ has already created to provide a wide-reaching shift in the recruitment system overall. We must seek to revolutionise how recruitment marketing is carried out, how information is presented, and improve how the entire system that individuals are placed within caters to their needs.
Ultimately, the research process needs a significant overhaul if we’re to see real diversity in participation, and be able to transform what it means to experience mental illness for everyone. And we hope this project is a step forwards in building towards that change.
Last updated: 18 December 2019