Improving Transparency of Longitudinal Health Research: Glossary, Infographics and accessible Study Summaries

This resource is a showcase summarising the outcomes and achievements of a project aimed at improving transparency, accessibility, and engagement in longitudinal health research. It offers links to study summaries, glossary expansions, and infographics, providing valuable tools for anyone interested in or involved with longitudinal health research, championing transparency and accessibility.

Background

On 30th October, 2023, new funding was awarded to improve transparency in health data access processes for researchers and the public. A new initiative, launched by Health Data Research UK (HDR UK) and funded by the Medical Research Council (MRC), enabled members of the UK Health Data Research Alliance and other custodians of health data to enhance the transparency of processes for accessing health datasets for research. 

DATAMIND, in collaboration with the DATAMIND Super Research Advisory Group (SRAG) and King’s College London (KCL), worked together to foster transparency, accessibility, and engagement in longitudinal health research. Together, we embarked on a journey to make health data more accessible and understandable for everyone. 

Project Outcomes

Through our collaborative efforts and dedication to transparency and accessibility, the project has achieved significant outcomes:

1. Transparent Study Summaries: We’ve created 58 plain language summaries of studies from the Catalogue of Mental Health Measures, providing transparent insights into UK-based research. These summaries, reviewed by early career researchers, students and the public, offer easy-to-understand information for all. 

2. Inclusive Glossary: Our glossary expansion incorporates terms relevant to longitudinal health research, ensuring inclusivity and relevance. Terms were agreed upon by members of the public, this glossary empowers data literacy and understanding for everyone.

3. Collaborative Infographics: Collaborating with KCL researchers, students, and the DATAMIND Super Research Advisory Group (SRAG), we have developed visually engaging infographics. These infographics explain aspects of patient and public participation, involvement, and engagement in longitudinal health research. Refined for clarity and accessibility, these visuals empower everyone to understand and participate in research that impacts their lives.

Download them as PDF’s

4. Empowering Collaboration: Every stage of our projects involves collaboration with stakeholders, including researchers, students, members of the public, and the UK Longitudinal Linkage Collaboration (UK LLC). Through workshops, coffee mornings, and close collaboration with graphic designers and PPI Leads, we’ve ensured that our materials reflect diverse perspectives and are accessible to all.

Making Research Accessible

Explore our resources from this project and join us in our mission to make longitudinal health research transparent and accessible for everyone. Together, we can empower understanding and engagement in research that impacts us all.

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