Landscaping longitudinal data: a lived experience perspective
My name is Grace Gatera, and I am part of an international team of 14 lived experience advisors working with the Wellcome Trust to support the vision for a world where no one is held back by mental health problems. The vision is an ambitious one, and we recognize that there must be incredible collaboration and work done to carry it out.
We at Wellcome believe that lived experience should be at the heart of all partnerships across mental health.
We also believe that this will be integral to achieving our vision. That is why I am involved in the Landscaping International Longitudinal Datasets project. The cross-institutional team is searching for datasets with the potential for transformative mental health research. As one of the Lived Experience Consultants on this project, I represent the interests of people with lived experience. I am keenly interested in keeping their needs and considerations at the heart of this work.
While contributing to this project, I have also learned so much on the job. For example, I now have a better understanding of why and how longitudinal datasets are key to moving mental health research forward. I knew that to ensure support for people with lived experience in the future, we need to listen to what works for them. But now I know that it is also necessary for us to know more about the data, and to have a strong base to understand and contribute to any future research.
Having this vantage point has enabled me to see how crucial it is to gather insight from many different angles, and to see how in order to make progress, we must work collaboratively.
That being said, it has been great to have lived experience experts be part of our project. This team has ensured the inclusive and thorough participation of people with lived experience from across the world. The lived experience experts that have been involved bring a wealth of varied expertise, including advocacy, human rights, mental health research and communications.
Previously, there had been limited incorporation of lived experience input into large-scale mental health research and science. The reasons for this may include that while the technical aspect of research is interesting, it sometimes needs a skilled communications expert to translate the work.
This demands researchers to put in the time and effort to better connect with lived experience experts, and given deadlines and funder expectations, this may not be prioritized. Instead, lived experience input often comes in at the end, at the dissemination stage.
Being involved in this work, particularly with this team, has been a very inviting way to expand my knowledge and accommodate my own entry into a new field of mental health science that I had not been involved with before. The project can initially appear deeply technical, without space for people with lived experience to contribute their expertise. Yet an incredible amount of effort has been put into bringing in lived experience and advisers at multiple stages, since the very beginning of the project.
It is always a good thing when lived experience experts like myself are embedded into exciting projects like these, and I deeply appreciate the opportunities for collaboration with researchers and scientists.
It heralds a new dawn, where participation and support from all members of the mental health community will become the norm – instead of a tick-box exercise.
This current project has been an encouraging experience and highlights the added value of interdisciplinary work. We are all learning, and by trying (and failing sometimes), we will soon fine-tune a way that works for our fields of science to co-produce and collaborate more.
Follow Grace at @GateraGrace on Twitter, and keep up with the project by following @L_Arseneault, @wellcometrust, @MQmentalhealth, and @ODIHQ. Get in touch with any longitudinal datasets you think may be relevant to the project by emailing us at landscaping-wellcome@kcl.ac.uk.
