Epilogue of a research adventure
For the past year, you heard us talk about our project ‘Landscaping International Longitudinal Datasets’. Commissioned by the Wellcome Trust, we – a crew of representatives from academic institutions (King’s College London), charities (MQ Mental Health Research), non-profit organisations (the Open Data Institute) and lived experience expert (LEE) groups – searched for and identified longitudinal datasets across the world and across sectors, on mental health or any other topics. We also described richness across all identified longitudinal datasets and presented areas that could be enriched via new data collection or recruitment of participants.
We embarked on this project without realising how intense the journey would be. Only a few months in, we discovered we would have to deliver breadth and depth at an incredible speed. Who would have guessed that we would discover more than 3,000 longitudinal datasets from around the world? No, not even our collaborators at Wellcome!
A year on – and 2 reports, 12 blogs, 3 presentations, and countless Twitter posts later – we are catching our breath and reflecting on what we unearthed:
Over 3,000 longitudinal datasets that came from 146 countries located everywhere across the world.
Richness for mental health research in many of these datasets that we illustrated in 19 pockets of value, for example: datasets using strong measurement of depression and anxiety; datasets focusing on under-represented groups or populations from under-represented locations; datasets harnessing routinely collected data; and datasets that are connected with a network of other datasets.
Areas of enrichment that fall under four domains: preservation and expansion of targeted populations; improvement of measurement and collection of new data; infrastructure and connectivity across datasets; and the promotion of LEE involvement, community engagement and service users’ input.
You can find out more details about our findings in the beautiful report we published in July 2023. You probably will not want to read it in one go – it is intense – but we suggest that you take it bit by bit instead, returning to it from time to time.
Some reminders along the way
This is the last blog of our series as the Landscaping project has ended with our unseasonable summer. Have a look here to explore the other blogs that highlight what we found, including blogs from our LEE collaborators and the landscapers who described the richness of longitudinal datasets across different parts of the world.
In addition to our findings, we were reminded of a few important facts along the way:
Teamwork is important: Great collaborators are hard to find. When you find some, stick with them and cherish them.
Funders can become a partner in research: It was great working with people at Wellcome who were so supportive and enthusiastic about our process and discoveries.
LEEs are essential to any type of research project: Working with our LEE collaborators was one of the most exciting and enriching parts of this project.
Dissemination and engagement can make a big difference: Dedicating time and effort to the look and accessibility of slides, social media posts and documents does not go wasted. People will pay more attention because it is pleasing to the eye.
Securing grants is the beginning and not the end: Beyond bringing research funding to academic institutions, doing the work can be fun and instructive.
What is next for the Landscaping project?
You may think that this is the end of the adventure and you will never hear from us and the Landscaping project again ... No! No!!
Guided by Wellcome’s vision for transformative mental health research, we will transform the work we did on this project into a live tool to facilitate the work of researchers. We will convert our discoveries into an interactive platform for increasing the discoverability of longitudinal datasets, maximising the use of already collected data and generating new knowledge based on meta-data.
We plan to review all identified datasets and extract information about their discoverability, the populations they cover and the data they have been collecting. We propose to develop an automated updating system to ensure the accuracy and relevance of this new platform in the years to come. We aim to offer a toolkit about LEE involvement in longitudinal mental health research. We envision disseminating the platform to both a wide audience and targeted stakeholders. We intend to analyse the meta-data to identify strengths and gaps of longitudinal datasets for mental health research.
This work would have been impossible without the engagement and support of the people who have shown interest in our work. We hope you are still on board with us, especially as we will soon seek your input to make sure this new platform responds to the needs of researchers.
