New research reveals that most digital mental health trials are failing to represent the very populations they aim to serve, risking the widening of health inequalities.

As mental health conditions, such as depression and anxiety continue to steadily rise among the UK population, with 1 in 4 people experiencing a mental health problem of some kind each year, researchers are continuing to find innovative ways of combatting these difficulties and there is a growth in digital solutions to provide greater reach.  

As NHS England shifts towards digital and community-based models of care, research trials conducted remotely and online which are known as ‘decentralised trials’, play a crucial role in evaluating digital mental health interventions and open the door to more people being able to get involved - but current evidence suggests they are not yet inclusive. 

Researchers from NIHR HealthTech Research Centre Mental Health (MindTech) and Nottingham Clinical Trials Unit (NCTU) at the University of Nottingham, Senior Research Fellow Dr Sophie Hall, Principal Research Fellow Dr Charlotte Hall, PhD student Alexia Jeayes and Assistant Psychologist Nikita Rattu, have recently published a paper exploring who gets involved and who gets excluded from digital mental health research trials titled ‘Who Gets Included? Equity in Digital and Decentralised Mental Health and Neurodevelopmental Trials’. The paper has found that in a review of 57 decentralised trials, fewer than 50% reported participants’ ethnicity, only 30% reported socioeconomic background, and less than 2% reported disability, which raises serious concerns about who is missing from research.  

Ethnic minority groups are an underrepresented group in research, with over 75% of participants identified as White and this number rising to 85% in UK samples. Involving seldom heard groups in designing decentralised trials from the very start is critical to improving this.  

Fatou, a participant who has recently been involved in research said, “Having a Black woman like myself involved helps ensure that research is conducted with greater understanding, care, and cultural awareness. I believe this will shape how research is done in the future and, ultimately, lead to better outcomes.”

Other key groups often not involved in digital mental health trials included men, those with lower educational attainment and people without employment. 

However, these aren’t the only demographics getting excluded. People experiencing digital exclusion are often unable to take part, OFCOM data suggests that approximately 5% of the UK population do not have access to the internet at all and 8% of the population don’t feel confident as an internet user, and with many trials requiring internet access, devices, and digital skills to access them, this puts those populations at a disadvantage from the offset. 

If digital mental health interventions, technologies and developments are being tested on insufficient samples from the offset, by not hearing from a variety of voices or only reflecting a small proportion of the end users, they risk being less effective or even inaccessible for those who need them most. The outcome could be publishing results not representative of the whole population, whilst failing to acknowledge the importance of inclusive and diverse inputs. 

Dr Sophie Hall, Senior Research Fellow at the Nottingham Clinical Trials Unit and University of Nottingham said, “This research reinforced for me how important it is that digital mental health services are designed with compassion, inclusivity, and real-world experiences at their heart. Working alongside Patient and Public Involvement contributors brought perspectives we might otherwise have missed and reminded us that all research can either reduce or widen inequalities.” 

Dr Hall continued “I hope these findings encourage the NHS, researchers, and policymakers to put equity at the centre of digital mental health care and empower patients and service users to make sure their voices are heard in taking part in research, to shape the evidence base on which healthcare decisions are made.” 

Now more than ever, it is important that research continues to provide a welcoming, open and accessible place for all. In the words popularised by disability rights activists Michael Masutha and William Rowland, “nothing about us, without us” continues to ring true, and advocates for those whose voices need to be heard as well. 

Why be part of research? 

Research can have a huge impact on decisions made within the healthcare sector - what technologies get used, what processes get updated and even what health conditions get prioritised. It’s crucial that everyone, where possible is involved in research to improve the outcomes and decisions made in the research and healthcare sectors.  

Some people may think that their voice isn’t loud enough to be heard, or their experience isn’t important enough to be listened to, but everyone deserves to have their voice listened to, whatever their experience. By hearing a variety of voices and a breadth of experiences, it helps paint a fuller and brighter picture of what it’s like to access the health and care sector, providing more meaningful and richer research.  

To celebrate Red4Research Day on 19 June, an initiative celebrating all who take part in research by encouraging people to wear red, we also encourage you to sign up to take part in research in whatever capacity you can. 

Register your interest on the NIHR Be Part of Research website and find information about research projects that are currently recruiting participants 

Read the paper in full:

Who Gets Included?