Data governance for health research

Briefings, blogs and reports from our ongoing work on data governance in health research.
S1R1C1
 

The evolving landscape of data governance for health research

These resources map the data governance landscape and make recommendations to better achieve the good data governance and trustworthy systems that are needed to bolster genomic insights and improve health outcomes. They set out our work for researchers – or anyone needing up to date overviews – the changes taking place in this vast evolving landscape of health and genomic data in research.

Importantly, they include our rigorous analysis of the challenges researchers and policy makers face in ensuring the responsible use of data from different sources.
S2R1C1
 

Synthetic data in health-related research

Generating synthetic health data from real patient data has led developers and regulators to question the extent to which they may remain ‘personal data’, governed by data protection law.

Find out more

 
S3R1C1
 

Related reports and briefings
S4R1C1

Data sharing can be a laborious and bureaucratic process for health researchers and is fraught with technical, legal and practical challenges.

The federation of trusted research environments for genomics and health

October 2024
S4R2C1

The success of future reforms to the use of confidential patient information will rely on building trustworthiness through transparency and meaningful engagement.

Control of patient information for medical research  in the COVID-19 era 

November 2021
S4R2C2

Funded by the Information Commissioner’s Office, this report considers practical research questions raised by the introduction of the General Data Protection Regulation (GDPR)

The GDPR and genomic data

May 2020
S4R2C3