We finalised the PPI toolkit, a document which offers a wide range of advice about effectively involving people with lived experience in research. Its aim is to support a PPI-friendly culture within and beyond DATAMIND and maximise the effectiveness of LEAG involvement. Link to come!
HealTAC 2026 | MQ’s data science meetings (April and October 2026) | MHP Industry survey | being co-applicants on other mental health data science projects | Contributing to PhD student training | Sharing experiences with other LEAGs
The LEAG also obtained an additional £14,980 grant from HDR UK PEDRI to create a public-friendly animation and web page about the Industry Guidelines. Work on this project is well-underway and the final web page and animation are expected to be public-ready by October 2026.
The Guidelines offers best-practice guidelines for commercial use of routinely collected mental health data and is co-written by LEAG members. Read more using this link – https://www.frontiersin.org/journals/psychiatry/articles/10.3389/fpsyt.2026.1760116/full
The LEAG team is working on a diverse range of projects within DATAMIND. Keep checking back for updates, as they’ll be sharing their progress soon! Stay tuned for exciting developments!
The group has been preparing to recruit new members to further diversify backgrounds and experiences within LEAG. Members have also supported behind-the-scenes work, reviewing funding applications for a creative project and providing feedback on abstracts submitted to the Mental Health Platform Summit.
The group shared their thoughts on an ECR Mental Health Platform fellowship applicant’s proposed research, helping to shape the next generation of studies.
The LEAG met with Lynne Hocking, Andrew McIntosh and Ann John to provide feedback on plans for upcoming Industry Forum events.
A LEAG member presented at the HealTAC conference, sharing the patient perspective on challenges of using Natural Language Processing (NLP) with electronic health records and how this may impact research.
The group formerly known as LEAG voted to rename themselves the Lived Experience Advisory Group (LEAG), to better reflect who they are and what they do.
Joe Hayes and Stephanie Wu (UCL) met with the LEAG to gather feedback on a new project exploring physical and mental health, including the potential benefits of GLP1-RAs (a new class of diabetes and obesity medication) for people with severe mental illness.
LEAG members met twice, in May and June, with Angus Roberts, Ben Holgate and Rob Stewart (KCL) to discuss the use of Natural Language Processing (getting computers to read text) in research, agreeing a shortlist of priority symptoms for exploration.
Four LEAG members travelled from across the UK to attend the MQ conference. One took part in a panel discussion and another presented a poster, showcasing lived experience voices on a national stage.
A follow-up meeting was held between LEAG members and the Comms Coordinator to review the progress of the website and PPI page updates. The team worked together to finalise the website changes and content, ensuring improved clarity and easier navigation.
LEAG members have been meeting with the new PPI Research Lead, Naomi, to share their hopes and expectations for the group going forward. Naomi is incorporating feedback from these meetings into future planning for the LEAG.
LEAG members met with the Comms Coordinator to discuss updates to the website and improvements to the PPI page. The focus was on enhancing the website’s structure, design, and content to improve user experience and make it more PPI-friendly. They also discussed refining the PPI page to better highlight public…
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Maddie France-Ratcliffe (University of Manchester) met with the LEAG to gather feedback on a prototype of a digital tool she is developing. The Equity Audit Tool will enable researchers to compare demographic characteristics (e.g. age, gender, ethnicity) of their research sample to population data to ensure their sample is representative…
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Three members of the LEAG joined the DATAMIND research team in London for a day of discussions and workshops at the Garden Museum in London and even recorded a podcast episode!
The LEAG met with Holly Hope (University of Manchester) to discuss how different physical and mental health symptoms cut across various diagnoses and how a better understanding of the way that symptoms can cluster together may improve patient care.
The group met with Rob Stewart and Angus Roberts (King’s College London) to talk about mental health data that is not currently routinely collected but could be useful for research. They discussed how this information could be extracted from medical records using a technique called ‘natural language processing’, or getting…
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Naomi Clements-Brod joined the DATAMIND team in Cambridge as PPI Research Lead at the end of January. She’s busy getting up to speed on past and present LEAG activities and planning for the future too!
The LEAG met with Heidi Tranter (University of Manchester) to discuss the Core Mental Health Data Set, a survey tool to encourage researchers working on physical health trials to capture data about mental health too. The Group provided valuable advice which was incorporated into the latest version of this tool. …
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A member of the LEAG attended the Data Saves Lives Conference, showcasing their initiatives and contributions to the health data research community. This engagement highlights the importance of data in improving outcomes and builds meaningful connections across the sector.
Two members of the LEAG attended the Mental Health Platform PPIE session, presenting an overview of the LEAG’s achievements within DATAMIND. They shared how their voices were heard and made a meaningful difference, highlighting how their involvement empowered them to branch out into other PPIE roles beyond DATAMIND and mental…
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Explore our Glossary hereSix members of the LEAG reviewed over 70+ new terms for the DATAMIND glossary, making sure they were easy to read and understand for everyone, including those without a scientific background.
The LEAG has been actively involved in the development of the Atlas of Longitudinal Studies, which is set to launch on 22 January. Over the past 3–4 months, this initiative has focused on providing a vital resource for accessing and understanding longitudinal data. It will support researchers in conducting analyses…
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The LEAG supported Emily Ball, Research Fellow at Edinburgh, in her project investigating which physical health conditions in later life increase the likelihood of developing mental health conditions. The team provided valuable advice on research design and methodology to ensure a robust and impactful study, aligning with efforts to identify…
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An LEAG member, in collaboration with the Catalogue of Mental Health Measures and UKLLC, co-authored a blog on the Transparency Process for the HDR UK website. The blog outlines the process, shares key insights, and provides links to all supporting materials, highlighting DATAMIND’s commitment to openness and ethical research practices.…
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A new process has been introduced where 2–4 LEAG members attend monthly Executive meetings on a rotational basis. This ensures diverse perspectives are represented, fosters inclusivity, and enhances the collaborative decision-making process within DATAMIND. Members also provide feedback to each other if unable to attend.
In July we bid farewell to Linda Jones as she begins her well-deserved retirement. Linda’s pivotal role in leading PPI at DATAMIND has left a lasting impact on our projects and team, especially the LEAG. Her contributions and presence will be greatly missed by all.
The Industry Guidelines paper, collaboratively developed with LEAG and led by Rudolf Cardinal, is nearing completion. We are finalising the content and expect it to be ready for publication soon. By March 2025, we plan to create a comprehensive toolkit/document for conducting research with industry partners, which will include a…
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In July, the Roadbuilder 3 Lead presented an update to the LEAG on RB3, focusing on the project’s findings related to the connection between mental and physical health, particularly in individuals with Severe Mental Illness (SMI). The LEAG recommended sharing these findings with the public and emphasised the importance of…
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In June, Ann John provided the LEAG with an update on DATAMIND 2, including plans to extend the functionalities of DATAMIND 1. This extension aims to enhance data integration and analytics capabilities, supporting our ongoing research initiatives. The LEAG are fully involved in all aspects of DATAMIND 2.
The DATAMIND RAG and PPIE Lead, along with King’s College London, concluded their collaboration to enhance the transparency of a longitudinal health research project. Their efforts were recognised with an award for their contributions and a poster. The project aimed to create transparent, transferable, and accessible materials for longitudinal health…
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Five members of the LEAG collaborated as authors on a paper titled “Co-Production Methods in Mental Health Research.” They worked on it throughout March and April, with MQ assisting in reviewing and refining the paper for publication. Confirmation on the publication details is pending and will be shared soon.
Four LEAG members attended the HDR UK PEDRI public consultation workshop. They contributed valuable insights and feedback while reviewing and discussing the PEDRI Good Practice Standards for PPIE.
Starting in May 2024, two LEAG members will join the NIHR Public Partnership Programme Board. This involvement will further strengthen LEAG’s commitment to public involvement and engagement in research.
A member of the LEAG is working with the research team and a design company to create an Infographic on longitudinal studies as part of the improving transparency project.
Seven members of the LEAG review catalogue summaries as part of the improving transparency project, aiming to make them more accessible in plain language.
One member of the LEAG joined the Early Career Researcher Coffee Morning, where our DATAMIND PPI Lead offered advice on PPIE in their research.
LEAG members contribute to the Winter Newsletter by providing updates and suggestions. Offering valuable insights and recommendations to ensure that the newsletter effectively communicates important information to its audience.
A member of LEAG helps make a slide for the Data Access and Discovery Webinar on February 6th, hosted by HDR UK. The webinar talked about the services and knowledge of two health data research hubs: Alleviate and DATAMIND. The slide created by the LEAG member showcases important initiatives the…
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Five LEAG members are collaborate with MQ on a paper titled “Co-Production Methods in Mental Health Research.
Shortlisted for HDR UK PPIE Award which celebrates best practice and innovation in PPIE across all aspects of health data research, infrastructure and service development within HDR UK and beyond.
Nine members of the LEAG attend catalogue summary workshop as part of the improving transparency project, aiming to make the summaries more accessible in plain language. For more information, please visit: https://www.cataloguementalhealth.ac.uk
Two LEAG members publish an article titled “How will AI make sense of our messy lives and improve our mental health?” in Frontiers. You can read the article at: https://www.frontiersin.org/journals/psychiatry/articles/10.3389/fpsyt.2024.1347358/full
Two LEAG members join Commercial Partnerships Panel at Cancer Research UK. They will access applications from companies requesting to use the data held by CRUK.
Eight LEAG members attended the DATAMIND Industry Forum on 8th December to take part in discussions on data sharing with industry. One LEAG member gave a presentation on a recent review of the challenges of sharing mental health data.
Members of the LEAG attended this meeting on 6th December, where teams from DATAMIND shared updates on their work. The meeting encouraged open discussions, providing an opportunity for everyone to ask questions and discuss progress.
Two LEAG members help make the newsletter more accessible by sharing their lived experiences of reading documents for accessibility.
LEAG prepare for the Industry Forum by creating a presentation and talk on the scoping review of documents regarding data sharing with industry.
LEAG Training Session: Exploring Data Access/Sharing and Natural Language Processing with Rudolf, PPI Lead at DATAMIND, and Rob, DATAMIND Co-Director.
Planning and collaboration starts with Kings College London to enhance transparency in longitudinal studies through the Transparency Funding. LEAG to review summaries, develop infographics, and contribute words and abbreviations to the glossary.
Three LEAG members continue to participate in Leadership and Management Team meetings, engaging in discussions regarding progress and sharing their perspectives.
The application deadline is 2nd October 2023, with funding allocated from 23rd October 2023 to 31st March 2024. A member of the LEAG is part of the team writing the application. Funding objective is to enhance transparency in longitudinal studies. This will be achieved by creating Infographics and Plain Language…
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LEAG members contribute to the glossary, a user-friendly resource that simplifies mental health research and data analysis with clear explanations of key terms, promoting better communication and collaboration in the field. Visit glossary here
LEAG group member develops a diagram on “The Research Process” highlighting how patients, carers and members of the public can be meaningfully involved in research studies at every stage of the process. See diagram
Seven members of the LEAG advised on content of genetic tables ensuring language and terms were fully understandable and accessible to patients and the public – part of FAIR data core activity.
Two LEAG members have been looking at papers and articles about sharing data with researchers and industry (a scoping review) to help in the creating of guidelines for industry which is a long-term project and part of the Business Development core activity
The LEAG recently asked over 60 questions to the academic/research team regarding data sharing and its journey, from collection at sources like GP visits to research use. The responses will be integrated into formal training sessions scheduled for October 2023 to enhance RAG members’ understanding of these processes.
As the Data Literacy course neared completion, seven LEAG members offered input and suggestions for any required changes at the knowledge exchange events. Course can be found here
Members of the LEAG attend the 2nd Discoverable Schools meeting.
LEAG members actively participated in longitudinal data workshops, advising on the theory of change. Their impact is evident in the final report, accessible here: https://www.landscaping-longitudinal-research.com/what-we-found One LEAG member also shared their experience in a blog post, available here: https://www.mqmentalhealth.org/shape-research-and-change-lives/
Four LEAG members sat on the Data Science Conference panel discussing PPIE in research. Read about their insights in their blog
Three LEAG members actively participate in Leadership and Management Team meetings, engaging in discussions regarding progress and sharing their perspectives.
After a meeting with the leads for linking physical and mental health, the LEAG start contributing and learn more about their plans. Another meeting will be scheduled later in 2023.
Nine LEAG members participated in the early website planning stages before a smaller group took the lead to develop the bios, RAG logo, and Story So Far sections. A visitor survey with an ability to contact the RAG is being developed along with fully accessible access to the pages. Plans…
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As part of DATAMIND’s collaboration with MQ for the Longitudinal Study and Theory of Change workshop, three LEAG members provided advice on the public’s viewpoint on the search for global datasets on mental health. MQ Fellows funding awards. To assist with the funding decision-making processes, the LEAG members also assessed…
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Eight members of the LEAG contributed ideas to this course and will offer feedback on the draft when it is made available. The RAG, who collaborated in the course’s development with the McPin Foundation, will receive a copy of the draught version.
This study is about the wellbeing of young people and links school data with research from Schools Health Research Network in Scotland (SHINE) and Schools Health Resource Network in Wales (SHRN). Five members of the LEAG met with the leads of the Discoverable Schools team to discuss ideas on progress…
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LEAG group members attend the following events: – HDR UK – Mental Health Campaign 2022 – Wellcome Trust – Open Science Conference 2022 – MQ – Data Science Conference and HDR UK Scientific Conference.2023
Twice-weekly sessions are attended by three members of the LEAG. These members developed own rota and feedback sheet to enable prompt sharing of the meetings to the PPI Lead and the rest of the team. For the PPIE aspect of DATAMIND, the RAG have created an Impact Log and Risk…
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LEAG had their first meeting in to discuss this, with first documents being created late 22
The Research Advisory Group (RAG) is made up of 13 individuals from England, Scotland, and Wales with various backgrounds, some of whom have first-hand experience with mental health issues, either as patients or as carers for others. Some members have prior Patient and Public Involvement and Engagement (PPIE) experience, while…
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