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
We recommended 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.
- The website for our Understanding Patient Data initiative launches. Our work on patient data transfers to this initiative.
- We respond to a joint consultation by the Royal Society and British Academy on the future of data governance [PDF 327KB].
- '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.
- A group of charities including Wellcome respond to the Cabinet Office’s consultation on better use of data in government [PDF 141KB].
- Following the publication of the Caldicott review, we start developing an independent initiative on the use of patient data. Understanding Patient Data aims 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.
- 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.
- A group of organisations including Wellcome respond to HSCIC’s consultation on draft terms of reference for ‘Independent Group Advising on the Release of Data' [PDF 400KB].
- With four other organisations we submit a letter to the Guardian stating our position on safeguarding patient data.
- We provide evidence to the Health Select Committee on delays faced by researchers trying to access data from the Health and Social Care Information Centre [PDF 319KB].
- We provide evidence to the Health Select Committee inquiry on care.data. Read the Health Select Committee transcripts.
- We respond to the Department of Health’s consultation on protecting health and care information [PDF 79KB].
- 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.
- 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.
- The care.data programme is publically launched.
- A group of charities including Wellcome publish information about the research benefits of using patient data.
- 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.
- 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].
- 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.