The Understandable principle recognises that transparency is essential for data use be fair and trustworthy. Transparency must extend beyond basic legal requirements and describe the whole data governance and use cycle using materials co-developed by the public. The aspirations are designed to unite the ecosystem and help reach a culture of openness and the provision of publicly accessible information on data access processes, how these are governed, and the resulting outputs.  Inclusive, public-informed and reviewed language and formats for sharing will underpin this. 

Resources

Understanding Patient Data: Putting people at the centre of decisions about patient data

This resource provides a cross sector approach to explaining the benefits of data science to the public and designing template materials for explaining complex concepts.
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DATAMIND Glossary

The DATAMIND glossary is a glossary of complex terms co-developed with public contributors.
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RECORD guidelines

Using the RECORD guidelines can improve transparent reporting of studies based on routinely collected data. This resource is tailored for studies using routinely collected data and helps improve clarity and replicability in research.
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Pan-UK Data Governance Steering Group: Transparency standards

The Transparency Standards have been designed to guide best practice for transparency in data access processes for both researchers and the public, and have received feedback and consultation from multiple stakeholders.
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UK Health Data Research Alliance: Data Use Registers Standard

This paper recommends the use of data use registers, which are public records of how data is being used for research, by who and for what purpose.
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Analysis of Data Use Registers published by health data custodians in the UK

This paper focuses on improving the clarity, accessibility and consistency of data use registers, making information about health data more transparent and useable for all stakeholders.
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Understanding Patient Data: Putting people at the centre of decisions about patient data

This webpage offers public-friendly explanations and visuals on how health data is used, helping research be guided and understandable.
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UK Longitudinal Linkage Collaboration Infographics

These infographics aim to raise public awareness of some of the most important laws and legal principles involved in the use of participants data for good public research. The infographics are designed to improve transparency of health data access processes. The infographic series is also available in audio, British Sign Language and several non-English language translations.
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