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Discover a wide range of tools, guidance and information to support meaningful public involvement and engagement with data and statistics.

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What are the best words to use when talking about data?

This resource provides guidance on how to use accessible and simple language when talking about data to enhance communication with patients and the public.

What does transparency mean?

This resource provides clarity on the definition of transparency and practical examples of its application in health data science to support public trust.

A Guide to Co-Producing Accessible Health Information

This guide helps public involvement and engagement professionals and researchers to collaborate with the public and patients, valuing their lived experiences to co-create easy to understand information. This ensures everyone equally grasps the benefit of health data.

How Do People Feel About the Use of Data?

This resource summarises public attitudes toward the use of patient data, based on research studies from 2010 to the present. It highlights key themes, such as support for using anonymised data for health research if there is public benefit, and concerns about industry using the data.

Examples of Public and Patient Engagement Activities

This resource provides examples of effective public engagement in health data through case studies. It covers topics like public attitudes toward COVID-19 technology and using theatrical performance to engage wider audiences.

Data Saves Lives Animations

These animations explain how patient data is used to improve healthcare while protecting confidentiality and privacy. This resource helps educate and reassure the public about the safe use of patient data.

What Happens to Health Data: A Guide to Large Datasets

This resource offers both a guide and video explaining how health data is gathered, stored, and used within the NHS.

Guide to explaining how patient data is used

This resource is designed to help healthcare professionals, researchers, and public contributors talk together and share how patient data is used in UK health services.

Comic on Children’s data rights

This unique comic story can enhance communication with young audiences when explaining children’s rights in using administrative data for research.

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