Improving conversations about patient data
We set up Understanding Patient Data to support conversations with the public, patients and healthcare professionals about health and care data.
It provides objective evidence about:
- how and why data can be used for care and research
- what’s allowed and what’s not allowed
- what options patients have
- how personal information is safeguarded.
Our work on patient data has transferred to this initiative.
The initiative is funded by Wellcome, the Medical Research Council, the Economic and Social Research Council, the Department of Health and Public Health England.
Understanding public attitudes towards data use
We’re exploring how people feel about the use of their patient data for purposes beyond individual care.
The Wellcome Monitor (Wave 3) found that almost four in five people surveyed (77%) would be willing to allow their medical records to be used in a research study if they were anonymised.
In March 2016, we commissioned Ipsos MORI to find out what the public thought about commercial organisations accessing health, medical and genetic data.
Supporting the regulation and governance of data
six key actions [PDF 314KB] to avoid repeating the mistakes of care.data. This NHS England initiative to extract patient information from GP databases across the country attracted widespread criticism in 2014. There are important lessons that can be learned about improving governance and communications around the use of data.
We were also involved in making sure the EU General Data Protection Regulation supported research.