Patient data in research
Patient data is extremely valuable for biomedical and healthcare research. But we will only be able to unlock the value of that data if concerns about patient privacy are taken seriously.
The public, healthcare professionals and researchers must have confidence that access to patient data is appropriately managed.
How do researchers use patient records?
Researchers can use patient records to:
- study the effectiveness of treatments and interventions
- find suitable people to take part in clinical trials
- understand more about the factors that affect health and disease.
We want to ensure that where patient data is used, it’s managed safely and securely while ensuring that the confidentiality of patients is respected.
What we’re doing
- We’re working to build public confidence so that people understand how patient data can be used for research, what’s allowed and not allowed, and how data is safeguarded.
- We’re supporting a new independent taskforce which is helping to develop better conversations about the use of patient data.
- We’re helping to ensure there are clear, trustworthy frameworks for how researchers access patient data.
- We’re involved in making sure the EU Data Protection Regulation supports research.
Timeline of key dates
- With the British Medical Association, the Royal College of General Practitioners and others, we produce a consensus document on best practice in using GP data for research [PDF 104KB].
- 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 care.data programme is publically launched.
- A group of charities including Wellcome publish information about the research benefits of using patient data.
- The care.data programme is postponed following public concerns.
- Nicola Perrin, head of policy at Wellcome, joins the care.data advisory group.
- The Care Act 2014 becomes law. It includes restrictions on how the Health and Social Care Information Centre (HSCIC) can share data.
- We hold a workshop with the Academy of Medical Sciences and the Medical Research Council. It looks at how to hold data securely and provide a safe environment for data analysis.
- We provide evidence to the Health Select Committee inquiry on care.data. Read the Health Select Committee transcripts.
- With four other organisations we submit a letter to the Guardian stating our position on safeguarding patient data.
- We respond to the Department of Health's consultation on the role of the National Data Guardian for Health and Social Care [PDF 164KB].
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.
- We release a commissioned report on public attitudes to commercial access to health data [PDF 2.8MB].
- 'Type 2' objections are honoured by the Health and Social Care Information Centre. These are objections by patients to their confidential information being disseminated beyond the HSCIC for purposes other than direct care.
- Following the publication of the Caldicott review, we support and host an independent taskforce on the use of patient data. It will develop innovative approaches and tools to encourage more effective communication about how patient data is used.
In light of the Caldicott recommendations, NHS England decides to cancel the care.data programme. It will continue to explore other routes to realising the benefits of sharing information.
- The National Data Guardian advises the health and care system to help ensure that people’s confidential information is secure and used properly.
- The Health and Social Care Information Centre (soon to be 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.
If you have any questions, contact Natalie Banner:
Sharing data helps researchers to access and build on new information and knowledge.
Science policy affects a broad range of issues, ranging from data sharing and gene editing, to intellectual property and regulation.