We invited members of our lived experience group to contribute to targeted searches using the Atlas of Longitudinal Datasets. The team at King's College London put together a shortlist of 25 datasets on the Atlas that were identified as having lived experience involvement. Lived experience experts (LEEs) then used the Atlas to read about these studies, gather further information about how the datasets included lived experience involvement, and make some observations on lived experience involvement in longitudinal research. Below you can read about what Jan found in her searches.

Background

As a Lived Experience Expert who has contributed to the development of the Atlas, I was asked in November 2025 to undertake targeted searches of 25 datasets across the Atlas from across the world. From the UK to Australia, Norway to Malawi, India and more. A wide range of countries and studies were included.

The Task

The goal was to look for evidence of lived experience engagement and involvement in a selection of 25 studies featured on the Atlas. I used the Atlas to search links within each study page and searched the wider web for more information.

I researched all 25 studies and collated my findings into a spreadsheet with colour-coded answers to show my findings and answer the questions I was given.

The Discoveries

This was a great opportunity for me to see the huge variety and worldwide coverage of the studies available on the Atlas. Searching for evidence of lived experience was a hugely positive and empowering experience.

Were there examples of good lived experience engagement in research?

Absolutely yes!! There were many examples of research teams working hard to engage with and involve lived experience in the studies.

Some highlights for me were:

• Involvement of local community leaders speaking the same language as the lived experience groups, who work to translate and improve communication between local groups and researchers who may not be based within the local community.
• Making access to information easier using videos and study postcards to share with the public.
• Setting up personalised website pages for the public to engage with studies.
• Ensuring children and young people were included when the research being undertaken was relevant to them.

How did innovative ideas engage the public?

The public and those with lived experience were engaged and involved thanks to many innovative ideas. For example:

• Invitations to Health Fairs where they could ask questions to research teams and join studies
• Have access to short films and animations to help them learn about studies
• Opportunities to join Advocacy Groups and be part of co-designing parts of the study
• People with lived experience speaking at events to explain the studies

Could patterns in public involvement be discovered?

Yes, there were definite patterns in the lived experience I discovered, including:

• The care and effort being taken to engage and involve
• The emphasis on plain, accessible language in communication with the public
• The importance of involving communities in research

Where were the gaps in involvement?

The gaps in lived experience and involvement were mainly in the areas of data analysis and governance, where lived experience was not usually implemented.

I saw some studies having lived experience here which is commendable, but there were few.

What could be improved?

There is so much evidence of great engagement and involvement across these studies, which is amazing news.

I hope that in future studies we will see lived experience helping to design studies and be involved in every part, including data analysis and governance. I fully appreciate that this requires additional time and training for everyone involved and can be challenging.

If co-design and co-production can be woven through studies, it could ensure engagement and involvement throughout and elevate the value of lived experience contribution.

The Conclusions

This has been an incredible journey for me, and I have learnt so much about engagement and involvement across a wide range of studies and countries.

There is so much care and consideration of lived experience across these studies and a huge enthusiasm from the public to get involved in them.

Innovative methods of communication and involvement of communities have ensured inclusivity and accessibility for many people to become engaged and involved.

I will take what I have learned from this task into any future lived experience work I am involved in and am grateful to KCL and MQ for this amazing opportunity.