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Get involved in the project
I am part of DATAMIND Research Advisory Group and was aware of the work of Louise Arsenault and her team on longitudinal data sets. When MQ asked me to be part of their Lived Experience Advisory Group to advise on this work, I was interested and excited, but a little apprehensive about getting involved.
After reading the initial materials and the details of their task, it seemed such a difficult role, but at the same time he felt that those with lived experience of mental health could only improve and expand on the work already in progress. with the support of the research team.
It got me thinking about the relationships involved in the research process.
Good relationships between researchers and those with lived experience are fundamental to a successful and meaningful research project.
This relationship can be distant, fragile and at odds with each other. So many opportunities for misunderstanding and exclusion, often totally involuntary.
The power of research and lived experience collaboration lies in the shared knowledge that is harnessed together to improve research, connect it to real life, and create outcomes that improve the lives of those who need it most. The research team can provide subject matter expertise, theory, science, their dedication to design, means for new discoveries, those with lived experience can provide the real life experience – this what it’s really like to live with their medical condition, the GP, the hospital experience and how is it to navigate the care system and family and societal support around them – or not.
What was it like to be part of the team
Thus, the challenge of being part of this complex project began.
We started with the Theory of Change workshop and discussed barriers to change, impact and long-term results. The topic and processes were complex but broken down into manageable chunks with full explanations and a fully collaborative way to incorporate all views and opinions into the discussions. At all times, I felt that lived experience was at the forefront of the processes and that the group of lived experience experts was able to add value and enrich the end results. The facilitation of the meetings was fully accessible and showed commitment to participation in the lived experience. Asking questions was encouraged and defended and there was time (perhaps not enough but there rarely is), a commodity that can sadly be overlooked in the hectic lives of all involved, but vital to ensure the inclusion and participation.
On a personal level, I felt that I had learned a lot from my colleagues about data collection and what is happening in the world (so important because research can be very siled on one aspect of health, a specific group, a small region of the UK) using data to improve mental health outcomes. He felt that colleagues learned from each other to achieve common goals and results.
Admittedly, the goal of co-design and co-development is never an easy option. It can be hard and sometimes frustrating work for everyone, but when developed and successfully carried out, it is worth the effort and therefore rewarding for everyone involved. Working together, sharing and channeling 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 what impact or effect you had, what happened to your feedback? have they been taken into account? 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 drafts of materials and changes implemented as a result of discussion is key to participation and engagement to ensure audiences and lived experience experts see the impact firsthand and the results their voice can produce. Researchers who adapt and develop their work because of lived experience perspectives need to tell them and explain why. Making a difference is an enriching experience that must be nurtured and recognized.
A comprehensive report was produced after the Theory of Change workshop clearly documenting what happened and the results and changes that were implemented as a result. To further strengthen the foundations already built at this meeting, additional work and meetings have been scheduled to consider enrichments. These enrichments were considered to make the most progress with the collected datasets and ultimately to improve mental health outcomes for patients. The lived experience counselors were fully included and involved in this process.
The discussions were far-reaching and diverse in so many aspects, including geographically, culturally, academically, and lived experience. It highlighted the vast differences in audience participation around the world – it was fascinating, illuminating and incredibly powerful. The thoughts, experiences and priorities of all participants were shared and discussed in an environment of mutual respect and safety.
Conclusions have been reached and agreed upon and will be included in the final report where everyone involved will see their contributions in a visible form.
reflections
For me, it was a stimulating and enriching learning experience, which taught me a lot about research and life. We all need to create safe environments to nurture the relationship between the seeker and the lived experience.
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 information, we must trust the recipient and believe that we and our information will be respected and protected.
We all need to remember that diversity is truly a superpower and gives us every opportunity to be a part of something that can change and improve lives, as difficult as that may be there must be room for everyone. .
Public involvement can be a frustrating and difficult experience when you don’t understand the subject or no one explains why you are involved, luckily it has been a positive and rewarding experience. It’s a long road, but we travel with purpose and learn so much along the way.
If you would like to get involved in research, you can volunteers to participate in studies here.
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