Patient data in research
Patient data is hugely valuable for research. But the value of that data can only be unlocked if concerns about patient privacy are taken seriously.
We want to make sure that where patient data is used, it’s managed safely and securely, and patient confidentiality is respected.
There’s huge potential to use patient data to improve health, care and services across the NHS. But if public confidence in how it’s used is lost, there can be serious consequences for research.
Why is it important to use patient data?
The information from patient data can help to:
- improve individual care
- understand more about disease risks and causes
- improve diagnosis
- develop new treatments and prevent disease
- plan NHS services
- improve patient safety
- evaluate government and NHS policy.
What we’re doing
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.
Timeline of key dates
Our timeline sets out some key dates in relation to the use of patient data in research.
- Dame Fiona Caldicott is tasked with developing clear guidelines for the protection of personal data, including making recommendations for an opt-out system for patients.
- The Care Act 2014 becomes law. It includes restrictions on how the Health and Social Care Information Centre (HSCIC) can share data.
- The care.data programme is postponed following public concerns.
- Nicola Perrin, head of policy at Wellcome, joins the care.data advisory group.
- Along with a consortium of government and charity funders led by the Medical Research Council, we launch four centres of excellence in e-health research across the UK. These centres become the Farr Institute.
- The National Data Guardian advises the health and care system to help make sure that people’s confidential information is secure and used properly.
- NHS Digital is the national body responsible for the collection, analysis and use of patient data.
- The Clinical Practice Research Datalink is a government service providing primary care data for research.
- The Medical Research Council has developed guidance and training materials for researchers and regulators working with health data.
- The National Institute for Health Research’s Health Data Finder helps researchers to find information about the UK healthcare data sets that are available for research.