The National Institute of Health Research (NIHR) is the nation's largest funder of health and social care research and provides the people, facilities and technology that enables research to thrive. The NIHR Research Design Service (RDS) offers free support and advice to researchers developing applications for the NIHR and other national peer review funders of applied health and social care research. The local RDS team is based in our School for Health and Social Care.
Here, Tracey Johns gives a personal account of her experience of working with young community partners as project lead for the NIHR Reaching Out Project.
I have been lucky during the past year to have had the opportunity to become friends with some interesting, intelligent and creative people in our local community. You might think that ‘friend’ is not the appropriate word to use when referring to research partnerships. However, if a friend is ‘a person with whom one has a bond of mutual affection’ and respect, then I can say that this is indeed true.
Interestingly, at our first project meeting when we were talking about our shared values and principles, Zak, a young asylum seeker from Syria, suggested that we include ‘love and peace’. When he said that I must admit I recoiled slightly, thinking I am not sure if that really fits with ‘research’. However, I am so glad we listened as he was right and working within a spirit of kindness has been something we have built in to every meeting and activity we have planned together.
Being explicit about this core principle underpinning our partnership has really made a difference and we have all appreciated this. It makes it hard to go back to the usual more formal research meetings where we go quickly around the table introducing ourselves by title and then get down to the serious business of research.
I have been coordinating public involvement for various public sector agencies for many years and I am noticing that we are finally having more honest and open discussions. We are talking less about acronyms or processes and more about the people, conversations and relationships. At the launch of the new NIHR ARC East of England I was delighted to hear one of the clinical theme leads invite us all (mainly an academic/clinical audience) to bring our own lived experience to the table as well as our professional knowledge. In his words ‘it is you, it is me, it is us’. In my opinion, this opens up the possibility for true co-production where we are able to exchange our individual knowledge, skills and lived experience to create a rich and truthful tapestry.
The Reaching Out pilot gave us time and resources to invest in exploring and building new and more diverse community-based research partnerships. I knew that building a collaborative bid, of which the community could have joint ownership, would be critical to the success of this project.
With only two weeks to submit an application, I took a deep breath and drove to the coastal community of Jaywick (the most deprived neighbourhood in England). The first person I met was Teresa who leads an innovative junior ambassador project involving local primary school children.
At first, Teresa was quite cautious about welcoming another ‘well-meaning’ researcher who might ‘take the data they needed, make judgements and leave without a thank you’. I trod carefully, taking care not to come across as too evangelical about the benefits of research and focused upon listening to Teresa’s insights about the local community.
It did not take long for us to find common ground, which we agreed, was to empower local children and young people with emotional health and wellbeing needs to have a voice in shaping priorities and decision-making. Teresa helped broker introductions to other relevant community groups, who in turn opened the door to seven young people joining the group.
Along the way other younger children tagged along with their parents and we discovered the benefits of being flexible and inclusive in the way we conducted our ‘project meetings’. Since our meetings were so relaxed and informal the younger children were able to actively join in and became key members of our group. One of my favourite photos (above) is of ten-year-old Barney sitting confidently in-between a Director and a Councillor from Colchester Borough Council talking about what matters to him and owning his ideas for research.
Two of our young partners are dealing with particularly challenging emotional health and wellbeing issues. Molly, aged 25, has multiple physical and mental health conditions and lives in residential care in Tendring. Zak is a 17-year-old from Syria who sought asylum in Colchester with his family when he was 14 after an extremely traumatic journey via Lebanon where he witnessed the murder of his brother Mustafa. I was very proud recently to co-present with them both at a national event and observe how they have grown in confidence and self-esteem through their involvement in the project.
“For me this project has been a game changer. I feel hopeful that our voices are actually being heard by people who maybe hadn’t thought to listen before as well as feeling empowered by the feedback on my own idea and the fact that people want it to progress further…I’ve gone from wondering what’s the point in my life to feeling like I have real direction and purpose.”
It was the young partners who gave us the idea and faith to delegate responsibility and funding to enable them to develop their own innovative solutions to facilitate honest conversations about mental health and wellbeing with children and young people in their own communities.
They succeeded in empowering many more children to have a voice in shaping health research whilst participating in a range of fun activities including art workshops, a forest school and various youth club activities. The young people showcased their ideas at a lively community event which we planned and hosted together involving over 80 representatives from local NHS, local authority and community stakeholders.
This has stimulated interest from researchers in drafting collaborative bids with young people to answer potential research questions which have emerged and, with an additional NIHR grant, we will be organising a series of co-design thinking workshops in early 2020.
One of the lessons I have learned is about embracing the challenges and refraining from making assumptions about what people can or cannot contribute to research. No matter how apparently vulnerable people may appear to us, we should always give them a choice about if and how they would like to be involved. If we do not do this, we risk only hearing the voices of those who are confident or resilient enough to speak up for themselves and would not have benefited from the incredible creativity and valuable insights of our young partners.
For further information about the Young Minds Re-think Research co-design workshops please contact firstname.lastname@example.org