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Insight blog: Posts tagged with patient data

Stories about the people, science and research of the Medical Research Council.

How secure data sharing can help us treat dementia

29 Aug 2018

Dementias Platform UK is a world-leading digital treasure trove, holding health data from millions of people, to help understand and treat dementia. Their one-stop shop gives researchers access to health data for dementia research and recognises contributions from researchers across the pay grade. Director Professor John Gallacher explains why it’s good for science and scientists.

Professor John Gallacher, Director of the Dementias Platform UK

Professor John Gallacher, Director of the Dementias Platform UK

In the UK, we’re fortunate to have a growing, rich resource of data from people that take part in studies which follow their health and lifestyle choices over time, known as cohort studies.

But there isn’t a single standardised way of storing and analysing this information. Without the right tools to search, interrogate and analyse this information, the data can seem impenetrable.

At Dementias Platform UK (DPUK) we have a solution – a place for researchers to access all the data they need to answer some of the toughest questions about dementia. We want the best minds to access the best data, regardless of their location.  [...]

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GDPR: What researchers need to know

16 Apr 2018

The EU General Data Protection Regulation (GDPR) and new Data Protection Act come into force on 25 May. Both apply in the UK and will influence research involving personal data. So what’s changing and how should you, as a researcher, prepare? Sarah Dickson, Head of the MRC Regulatory Support Centre, is here to help.

What is GDPR?

The EU General Data Protection Regulation (GDPR), along with the new UK Data Protection Act, will govern the processing (holding or using) of personal data in the UK.

Although the new regulations haven’t been designed specifically for research, we’ll need to make some changes to research practice. The Information Commissioner’s Office (ICO) is the UK regulator. The Health Research Authority (HRA), in collaboration, is providing official guidance for people working in health and social care research. We‘re working with both organisations. [...]

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Greater use of new technology to collect data can revolutionise longitudinal studies

24 Jan 2018

Phone app measuring air quality

Dr Andy Skinner and Chris Stone believe that new technology has the potential to transform health data collection in the longitudinal community – and that there are already promising signs of this among early adopters.

In the last decade or so advances in bioinformatics have made it easier for health researchers to study people’s genetic make-up (genotype) in detail. For example, it is now possible – and has become almost routine – for health researchers to identify genes associated with specific diseases using genome-wide association studies. [...]

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Sharing rare data for a common cause

10 Jan 2018

The information that gathers in our wake as we move through life and health centre or hospital waiting rooms is a powerful tool for medical research. Cecily Berryman tells us how a health emergency brought discussions about data science to the heart of her family.

Three years ago my husband suddenly became very ill. He needed emergency surgery to fix a tear in his aorta, the huge artery that carries blood as it pumps away from the heart. Afterwards the surgeon called it an ‘acute aortic dissection’ and mentioned it was likely to be a connective tissue disorder that has a genetic cause. Extensive testing revealed it was not a known disorder. [...]

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The precision medicine revolution: putting the patient first

5 Dec 2017

Precision medicine is putting the patient at the centre of healthcare. But what does precision medicine actually mean? And if you’re interested in using it in your research, where do you start? We’ve created a guide to help, explained here by Professor Stephen Holgate, MRC Clinical Professor of Immunopharmacology, who led the work.

Put simply, precision medicine aims to ensure that the right patient gets the right treatment at the right time.

Professor Stephen Holgate

Our genetics, together with our lifestyles and our environment, determine our health. Precision medicine is an exciting approach that will help to determine our individual risk of developing disease, detect illness earlier and determine the most effective interventions to help improve our health, whether they are medicines, lifestyle choices, or changes in diet. [...]

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Beyond open: making your data accessible

29 Jul 2016

Sense about Science have recently set up a new website to help people make sense of children’s heart surgery data; Joanne Thomas and Emily Jesper from the charity explain why and how they made that data make sense.

Two percentages are shown being weighed against each other with the headline 'NO!''

A higher survival rate does not mean a better hospital. © PRAIS2 website project team 2016

At Sense about Science, we strongly believe that patients and families should be involved in how medical research is conducted and communicated. So when Dr Christina Pagel asked us to help codevelop the Understanding Children’s Heart Surgery Outcomes website, and include people who need this information in the project, we didn’t hesitate. [...]

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Q&A: research using patient data

3 Sep 2013

(Image credit: Flickr/jfcherry)

(Image credit: Wikipedia/jfcherry)

There has been a lot of discussion lately about the huge benefits that could come from research using patient data, but what does that actually mean? How is the data used, and what’s in it for the patients? We asked Dr Janet Valentine, Head of Public Health and Ageing at the MRC.

What is research using patient data?

You might have heard it described as e-health, big data, health informatics or health record linkage. They all mean more or less the same thing: research using the information held in NHS health records captured every time we visit a doctor or go to hospital. By using these health records, researchers can help identify more effective treatments, monitor drug safety, assess services provided in the NHS and better understand the causes of diseases.

What types of patient data are used?

GP data, such as routine vaccinations, lifestyle information, and the types of illnesses we have had; hospital stays or A&E visits; prenatal data; information on issued prescriptions; results of scans and screens; and registries of diseases like cancer and heart disease. [...]

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