Nothing about them without them

#CelebratingEngagement
with Dr Lindsay Dewa

Lindsay Dewa, in a striped top and dungarees, smiling

鈥淚 want to give a voice to young people with mental health difficulties in everything I do鈥 explains Lindsay Dewa. I鈥檝e just watched, which she co-produced last year with a film company and a group of young people who had lived experience of the issues portrayed, including eating disorders, challenges with mental health and social isolation.

We鈥檙e discussing why public engagement is so important in her field. An Advanced Research Fellow in Mental Health, Lindsay was recognised with the President鈥檚 Medal for Excellence in Societal Engagement last year, for work ranging from the co-production of Nexus to her involvement in 911今日黑料 Lates and the Great Exhibition Road Festival.

鈥淚n every new project it鈥檚 a primary focus - how can I involve people with lived experience, what sort of new things can we do, skills can we provide for or develop鈥

It鈥檚 just trying to really break down those barriers and boundaries of power and come out on level playing fields straight from the offset.鈥

鈥淎nd then in terms of engagement, it鈥檚 so important to try different avenues to disseminate research, and have that two-way interaction with the public at all times.鈥  

鈥淣owadays, a blog is quite typical, a Twitter post, conference and paper 鈥 in my head that鈥檚 the traditional way, but it鈥檚 about trying to move past that and go right, how can we a bit more creative, how can we get the messages across to people that the research matters to. Obviously Nexus was part of that 鈥 it鈥檚 a different way of bringing the findings to the public through creative media.鈥  

Lindsay Dewa, a young woman with long wavy hair, sits with her arms crossed in front of a garden bench
Lindsay Dewa stands against a black and white patterned wall with her dog at her feet

Lindsay with her dog, Baxter

Lindsay with her dog, Baxter

Nexus, which explores themes of bulimia, digital exclusion and poverty, and the importance of social connection, depicts the anguish of lockdown for a vulnerable teenage boy. It strikes me as an important story to tell 鈥 that the experiences of children and young people unfolded behind closed doors during the pandemic, and might easily go unacknowledged and unexplored without media focus. But what made Lindsay want to get involved?  

鈥淚t was actually still lockdown when I was approached by the film production company [Inner Eye Productions]. We were already thinking of different ways of dissemination.

As soon as they got in touch I thought, what an opportunity this is, to be able to really do something different...

...and again, I was very forceful in making sure young people were going to be involved 鈥 what an opportunity for them, to be able to develop skills in film production 鈥 wow!鈥 

I ask Lindsay what she would say to researchers who are just starting out. What鈥檚 the value of engagement, and, film producers aside, how do you get started? 

鈥淚t鈥檚 completely worth it for three different reasons. One is the young person or person with lived experience 鈥 wholeheartedly, you鈥檙e going to make a difference in that person鈥檚 life, whether it鈥檚 development, confidence building, or just connecting them to something -

it can鈥檛 be lessened, the impact you may have on that person鈥檚 life, for their future.  

The second thing I鈥檇 say is that you鈥檇 really benefit yourself by learning from other people and the people that the research actually is about. Listening skills, collaboration 鈥 it鈥檚 going to help your career going forward. And I鈥檓 always inspired, every day. 

The third thing is the research itself. [Public engagement] can really dramatically impact every stage of the research, from recruitment to dissemination.鈥 

A young woman in dungarees and stripy top stands inside an orange geometric frame

Finally, I ask Lindsay what鈥檚 next for her and for her projects. She has so many plates in the air that I can barely jot them down. She and her team continue to work with the Royal College of Psychiatrists and West London NHS Trust on the development of a digital information hub for resources drawn from Nexus. Following a two-way interaction at the V&A as part of the Great Exhibition Road Festival, in which the public were asked to suggest what happens in Nexus 2, alongside new results from a study involving the same initial group of young people, she hopes to raise funding for a sequel. And in terms of her own research?  

鈥淒igital mental health is definitely my focus at the moment; it鈥檚 how I鈥檓 funded. However, I鈥檓 looking to co-design interventions for young people. Detecting deterioration and intervening; using social connection as a way of preventing deterioration; But pushing what is expected of co-production鈥 Just trying to fill those gaps, and get those voices into different research designs, like big data projects, and randomised controlled trials not just qualitative research, which is the most common.

Helping to shape all research about young people with young people is what is needed! Nothing about them, without them!鈥 

Lindsay Dewa, a young woman with long wavy hair wearing dungarees, sits on a low wall with her dog

Lindsay with her much missed dog, Baxter

Lindsay with her much missed dog, Baxter

A young woman in a striped top holds a small white dog inside an orange geometric frame

Lindsay with her much missed dog Baxter

Lindsay with her much missed dog Baxter

A young woman in a striped top holds a small white dog inside an orange geometric frame

Lindsay with her much missed dog Baxter

Lindsay with her much missed dog Baxter

Lindsay was photographed with her dog Baxter, and asked us to add this note.

"Not long after this unfortunately we had to say goodbye to Baxter after a short illness. It makes this day and the beautiful pictures that came from it very special and I'll be forever grateful to Sarah, Nisha and Tim for making it happen".