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Posts tagged ‘patient data’

Sharing rare data for a common cause

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

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

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. Read more