Shaping research through lived experience

My name is Jan Speechley and I have been involved in several lived experience contributor roles for MQ, being part of a public contributor panel at their Data Science Conference and being part of the MQ Fellowship process scoring applications and interviewing researchers. 

I would like to share my experience as a Lived Experience Advisor on the Longitudinal Datasets project, as an example of a successful collaboration between researchers and Lived Experience Advisors and to highlight the dynamic relationships that develop in research projects. 

Getting involved with the project 

I am part of the DATAMIND Research Advisory Group and was aware of the work of Louise Arsenault and her team on Longitudinal Datasets. When I was asked by MQ to be part of their Lived Experience Advisory Group advising on this work I was interested and excited but a little apprehensive to get involved. 

Having read the initial materials and detail of their task it seemed such a challenging role but at the same time it felt that those with lived experience of mental health could only enhance and develop the work that was happening already with support from the research team. 

It made me consider the relationships involved in the research process. 

Good relationships between researchers and those with lived experience are fundamental for a successful and meaningful research project.  This relationship can be distant, fragile and at odds with each other. The are so many opportunities for misunderstanding and exclusion, which is usually completely unintentional. 

The power of collaboration between research and lived experience lies in the shared knowledge being harnessed together to enhance the research, relate it to real life and create outcomes that improve the lives of those who most need it. The research team can provide expertise of the subject, the theory, the science, their dedication to design, the means of new discovery, those with lived experience can provide the real life experience of well, life – what it is really like to live with their health condition, the GP, hospital experience, and how is it like to navigate the care system and the family and societal support that is around them – or not.  

What it was like to be part of the team 

So, the challenge of being part of this complex project began. 

We began with the Theory of Change Workshop and discussed barriers to change, impact and long-term outcomes. The subject matter and processes were complex but broken into manageable chunks with full explanations and a fully collaborative way of incorporating all views and opinions into the discussions. At all times I felt that lived experience was at the forefront of the processes and the group of lived experience experts were able to add value and enrich the final outcomes. The facilitation of the meetings was fully accessible and showed the commitment to lived experience involvement. Asking questions was encouraged and championed and there was time, (maybe not enough but there rarely is), a commodity which can be sadly overlooked in the busy lives of all involved, but vital to ensure inclusion and participation.  

On a personal level I felt I learned so much from colleagues about data collection and what is happening globally (so important as research can be very siloed on one aspect of health, one specific group, one small area of the UK) using data to improve mental health outcomes. It felt that colleagues were learning from each other to reached shared goals and outcomes.  

Surely, the goal of co design and co-development is never an easy option. It can be hard work and at times frustrating for all, but when developed and successfully achieved is worthwhile and so rewarding for all involved. Working together and sharing and channelling knowledge can improve care, services and ultimately lives. 

Sometimes when you are involved in this type of work it ends and you never really know the impact or effect you have had, what happened to your comments? were they considered? Did you make a difference? Did people hear you, understand you or ignore you? 

The impact of Lived Experience Advisors on the project 

Feedback and sharing of final versions of materials and changes implemented as a result of discussion is vital in involvement and engagement to ensure the public and lived experience experts see first-hand impact and outcomes that their voice can make happen. Researchers who adapt and develop their work because of lived experience views need to tell them and explain why. Making a difference is a rewarding experience that must be nurtured and acknowledged. 

A full report was produced after the Theory of Change workshop clearly documenting what had happened and the outcomes and changes that were implemented as a result. To further enhance the foundations already built in this meeting additional work and meetings were scheduled to consider enrichments. These enrichments were considered to make the most advancements with the datasets collected and ultimately to improve mental health outcomes for patients. Lived Experience Advisors were fully included and involved in this process. 

Discussions were far reaching and diverse in so many aspects including, geographically, culturally, from an academic and lived experience perspective. It highlighted the vast differences in public involvement across the world – this was fascinating enlightening and incredibly powerful. The thoughts and experiences and priorities of all attending was shared and discussed in a mutually respectful and safe environment. 

The conclusions were reached and agreed and will be included in the final report where all involved will see their contributions in visible form. 

Reflections 

For me, it was both a challenging and rewarding learning experience, which taught me so much about research and life. We must all build safe environments to nurture the researcher and lived experience relationship.  

As in life, a new relationship needs time to build trust on both sides and there will be bumps in the road. To share personal details, we have to trust the recipient and believe we and our details will be respected and protected. 

We must all remember that diversity is truly a superpower and gives us all the opportunities to be part of something that can change and improve lives however challenging that may be there must be space for everyone. 

Public involvement can be a frustrating and difficult experience when you do not understand the subject or no one explains why you are involved, thankfully this experience was positive and fulfilling. It is a long road, but we are travelling with purpose and learning so much along the way.