New approach planned to widen participation in mental health research

Around 30 Mersey Care patients and staff have joined together to develop a campaign aimed at increasing involvement in research and improvements to mental health services.

The interested attendees took part in a workshop to explore ways to explain and promote a new approach called ‘Count Me In’ which will be rolled out towards the end of 2024.

Lead Service User Representative Don Bryant from the Mental Health Research for Innovation Centre (M-RIC), said: "It's very concerning 40 per cent of clinical trials in mental health are stopped because of a combination of lack of participants and dropout rates.

“We need more people to take part in research and we need their input to be more highly valued, because service users are as important as the researchers themselves. Without the input of service users there will be no research and no improvement in mental health services.”

Pictured above: Don Bryant, Lead Service User Reprsentative at M-RiC, addresses the event attendees

Adapted from a similar approach at Oxford Health NHS Foundation Trust, Count Me In will ensure all eligible patients and service users are contacted about relevant research opportunities within five years of being a service user and/or carer. Individuals can opt out if they prefer not to be contacted about research activities.

The event started with a drama improvisation by service users directed by Collective Encounters, an organisation that makes theatre for social change. The actors demonstrated some of the challenges faced by service users – and the potential for improvement through research.

Service user Kelly Ann Burrows said: “I found it very interesting to hear how research is helping people who suffer with their mental health. The drama with people talking about the stigma and other problems was really good as you got a feeling for how people suffer with their mental health, so let’s get this campaign out there - count me in!”

Mersey Care nurse Sheree Desson said: “As a nurse who has a vested interest in patient care and service improvements, having service users at the heart of this campaign fills me with joy. They are the people who have lived experience to show us where we need to improve and how.

“What I loved about the day was all the valued feedback received, how everyone had their own opinion on aspects of the campaign and more importantly why they thought different things would work or not work and with reason.

“I'll be encouraging everyone to participate in Count Me In and will be pushing for more of my colleagues to be champions of this campaign.”

Mersey Care Research and Effectiveness Lead Oladayo Bifarin, who is leading on the development and implementation of Count Me In, said: “I'd like to thank everyone who took part in our campaign workshop and made valuable contributions to our thinking and planning for an important new project to increase the number of patients and staff taking part in research.

“I'd particularly like to thank the service users who acted in the drama, which illustrated why we need more research. Everyone’s ideas and suggestions will be considered along with feedback from other engagement activities, so that we can lay the best foundations for rolling out Count Me In.”

The event was the latest in an ongoing series of consultation meetings with service users and community groups about Count Me In, to increase involvement in research and gather feedback about plans for the implementation of Count Me In. 

Work is being undertaken by information governance and software development specialists to create a secure database and strictly governed processes to ensure appropriate access by researchers to information about patients.