Bridging the gap between researchers and those affected by mental health conditions By Kathryn Excell, Head of Digital, MQ: Transforming Mental Health Published: 18 December 2019 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. It takes on average 10 years to get a correct diagnosis, and many treatments are still based on trial and error approaches. That’s why MQ, the mental health research charity, was propelled into existence - to help address these huge injustices and provide a brighter future for mental health. The issue If we want to see a real shift in mental health care then we need more research, but research relies on participation – without the views and involvement of those affected we won’t be able to achieve the progress needed. Yet mental health researchers often struggle to recruit participants. In fact, just 2% of those in mental health services are involved in NHS funded research, that’s compared to almost 20% of cancer patients. This damning statistic drove us to create the Participate platform, which helps researchers with recruitment challenges, whilst easily allowing the public and those affected to get involved in mental health research. The process We’ve taken a gradual and iterative approach to developing the Participate platform. We began by creating a minimum viable product on MQ’s existing site. This was a simple web page that listed studies looking for participants, with links or researcher contact details for them to find out more. The process was horribly clunky for researchers and participants to use and involved lots of manual processing by MQ staff. But it helped us to quickly and cheaply, validate our idea – and make sure this was something researchers and the public wanted. Following this we worked closely with digital agency Torchbox over the course of a year to bring Participate to life. During this time, we used agile working practices - such as design and development sprints - to expand our design thinking and then build the product iteratively. This approach meant that we could continually test our ideas with our users (researchers and participants) and make sure that what we were building worked for them. It also allowed us to gradually build the case for investment (as this was almost entirely funded by donors, with very little direct investment from MQ). At the end of each ‘sprint’ we had tangible outputs and user feedback that we could share with potential donors to bring the product to life. This has been a new way of working for MQ, and at times took us out of our comfort zone, but the impact of this work is already being felt. The results I’m sure there are readers wondering why MQ decided to explore this idea when there are already brilliant websites such as NIHR’s Be Part of Research out there. We debated this a lot internally; we are big supporters and promoters of NIHR’s platform, and we share the same aim – we want to see more active involvement in research. Ultimately, we decided that there was space for another platform, which focused just on mental health research. And as a small, young organisation, we can move quickly in ways that larger organisations might not be able to, testing ideas that they might struggle to get internal approval for. We hope to share whatever we learn with others working in this space, to help move towards our combined aim of better participation in research. MQ’s Participate platform has received overwhelming positive feedback so far. We’ve exceeded all expectations in terms of engagement from potential participants – in the first three weeks since launch we’ve had almost 30,000 visits to the site and over 2,000 people have applied to take part in a study. Researcher feedback has been equally positive. One researcher from Trinity College London said: “The MQ research platform has provided us with a steady stream of research participants since the site launched in November 2019. It’s easy for participants to use and explains our research in a friendly and inviting way. Recruitment for mental health studies can often be challenging but the MQ research platform has streamlined the process and made it easier for participants to find our study. We really can’t thank the team at MQ enough for their support.” The future This is just the beginning of our journey. We’re already embarking on a second stage of development which is focusing on how we can improve diversity within mental health research, and how the site might meet the needs of research institutions. This includes scoping the income-generating potential of Participate. Our vision is to connect mental health researchers with the wider public to improve the mental health of everyone. Launching Participate is the first step to achieving that vision but there are so many other ways that we can build those connections. We hope that this will be the start of broader conversation around how we can improve the involvement of those affected by mental health conditions in the research designed to help them.