The IMMERSE blog

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Lena de Thurah

PhD student

KU Leuven


The value of involving people with lived experience in mental health research

As PhD researchers focused on integrating digital technology into mental health care, we spent many years studying our specific research topic. This requires us to read an endless number of books and academic papers, and to sit through hours of lectures and conference presentations. All in an attempt to get wiser and understand how we can make the best digital tools to help people with mental health problems. While books, papers, lectures, and conferences can teach us a lot, it is also important that we get out of our academic bubble and get in touch with ‘’the real world’’.

Through participatory research, we aim to involve people with relevant experiences in helping us improve our research. In various stages of the research, this can be accomplished through interviews, workshops, or advisory boards. Within the IMMERSE project, we work with IT developers, doctors, therapists, and people with mental health problems to develop a smartphone app to help people track and understand their mental health better. In this process, we conduct interviews to understand how clinicians and healthcare service users use technology in their work and everyday lives. Besides that, we ask them to test newly developed app prototypes within the therapy that they give/receive and give us feedback on their effectiveness.

In addition, we have local advisory boards consisting of people who either have experienced mental health problems themselves or are close relatives of someone with mental health problems. These advisory boards come together approximately four times a year to discuss different topics and questions that the IMMERSE consortium would like input on. For example, are we asking the right research questions? How can we improve recruitment and retention for our clinical studies? How do we best communicate our research to the broader public? Or how might we interpret the results from our survey studies? The consortium then uses the board members' input to guide our work and research.

Helga is a member of one of our advisory boards. Her partner struggles with psychotic vulnerability, and it is important for her that patients and their relatives are being heard in questions related to psychiatric care and research.

‘’When I received an invitation to join the advisory board, I did not hesitate for a second. In mental health care, patients and their loved ones are often not listened to enough. I really appreciate that the IMMERSE team is committed to this.’’

The advisory boards consist of different types of people with different back-stories, yet with a common goal to use their experience to improve mental health research. Helga experiences that being a part of the advisory board is valuable to the project as well as to her personally.

’My participation gives me great satisfaction. It is fascinating and educational to brainstorm with other experts by experience, both patients and relatives, to discover both similarities and differences in experiences and points of view. It has broadened my knowledge and vision of psychosis and psychiatric care. If we can contribute to the project with our input, I would find it very valuable.’’

We gain incredibly valuable insight into what it is like to live with mental health problems and what can be done to improve people's quality of life by working with people who have lived experiences. This information helps us increase the validity of our work and allows us to co-design new health interventions together with experience experts, hence ensuring that they are relevant and useful. Furthermore, it gives people with mental health problems an opportunity to speak up and become active partners rather than passive recipients or research objects. Participatory research is therefore believed to be one of the best ways of improving health services, health outcomes, and people’s quality of life. This is why we are extremely grateful to all our advisory board members and study participants who take part in our research and share their invaluable experiences and insights with us. We could not do the work we do without you.