Service user involvement in the NIHR Crisis Care Study
Blog by Emma Wilson (Service User Reference Group member)
What is the study about?
This study aims to investigate the role of the voluntary sector (rather than statutory services such as the NHS or Local Authority) in providing mental health crisis care in England.
What is public involvement in research?
A definition of public involvement in research has been put together by INVOLVE, a national advisory group funded by the National Institute for Health Research (NIHR). According to them, research includes public involvement when it is “carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them”. Such involvement may span across the research lifecycle – from identifying research priorities, to commenting and developing patient information leaflets or questionnaires, to assisting with the interview process with study participants. To be effective and meaningful, it must be more than a one-off tick boxing exercise. Ideally, public involvement will run over a period of time.
Why get involved in research?
Involving oneself in research is a highly empowering and valuable opportunity for everyone connected to the project. On the one hand, the individual gains insight into the research process and the cutting-edge research currently taking place, whilst researchers receive perspectives through the lens of someone more detached from the project.
It is also possible to get involved in a project as a service user. Also known as an ‘expert by experience’, involving a service user or carer is an opportunity to add colour to a project that empirical evidence alone could never capture.
How have service users been involved in this project?
For this study, a service user reference group was formed. This group, of which I am a member, fits within the overall project structure, where its chairperson is also a member of the main project committee. With a membership of 9 people, the group meets every 3-4 months and members are paid for their time. A pre-circulated agenda and any preparatory materials are discussed and dissected in face-to-face meetings of approximately 4 hours.
One of our initial discussions centred around the definition of what ‘crisis’ means to us. Is it something subjective or objective? Must it involve the emergency services or inpatient care, or can it include something managed in the community? As individuals with our own unique experiences of a mental health crisis, our input can help to validate and enhance the relevancy of this work. It can also better ensure that there is a shared, common understanding of terms used – a critical element laying the project foundations.
We have also assisted in the process of identifying voluntary sector organisations that the research team may wish to approach for interview. From my personal and professional background of young people’s mental health, I can champion the voices of this demographic and ensure that they are included in the recruitment of study participants.
Which factors have ensured the effectiveness of service user engagement within this project?
As previously mentioned, meaningful involvement requires active participation throughout the study lifecycle. It is far more than simply being consulted on a project; it is the opportunity to shape the direction of a project.
It is also important to consider the approach taken when working alongside service users or members of the public. Firstly, the use of jargon should be placed to a minimum, or any confusion clearly explained by members of the research team. Secondly, and perhaps most importantly, participants should feel valued, respected and supported. On a project such as this one, with a sensitive subject matter which discusses mental health crises, it has been important to interact with sensitivity and compassion. It is important to create a safe space with a common group agreement, in order to protect the mental health of all members of the group.
Prompt payment and the covering of travel expenses and subsistence has been greatly appreciated, as it also enables us to spare the time to attend these meetings.
As the project progresses, we will be invited to project updates with commissioners and other relevant stakeholders. We are also able to get involved in the dissemination process as well as support the social media campaign to raise awareness about the project.
To conclude, there is an undeniable value to both the public and research profession that both work collaboratively for the future progression of scientific ventures. The NIHR project on mental health crisis care is a positive example that I hope to see emulated across the research sector in the years to come.
Emma Wilson (MSc LLB) is a freelance trainer, consultant and writer in the field of mental health. She is a Youth MHFA Instructor who is trained to deliver the 2-day, internationally recognised youth mental health first aid course. Emma has a broad range of personal and professional experience of working within the mental health sector and has sat on several advisory groups over the past 4.5 years. You can follow her on Twitter (@MindfulEm) and visit Emma's website.