Medical records: Privacy versus the public good
Is it right to allow people's private medical records to be used in research?
For Professor Jackie Cassell, the details of our visits to the GP provide valuable information that could help shape the future of healthcare for us all.
For example, research into GP's patient records (most of which are nowadays digitised) has shown that older women seem less likely to get referred quickly when they have a cancer of the ovary. They can also reveal patterns of health, such as the incidence of sexually transmitted disease, or health patterns associated with living near mobile phone masts or incinerators.
Professor Cassell is a primary care epidemiologist who specialises in digital records. Her research involves the analysis of data that helps to build a picture of health in our society, so that GP care can be better designed and targeted.
In Who's Looking at Your Medical Records - the last of the four University of Sussex lectures in the Ropetackle Centre's Art in Life Sciences Festival - Professor Cassell will explain why medical records research is so invaluable and how meaningful information can be retrieved from patient records.
Professor Cassell, of Brighton and Sussex Medical School, says: "Just like your supermarket loyalty card or internet searches, your medical records tell stories - about your health, what problems you consulted your GP about, what vaccinations you had, and when you moved to the area and registered with the GP. This story would be of interest to you and to any GP or nurse seeing you.
"Epidemiologists like me are interested in the health of populations of people. Who gets what illness and why? And how can we make sure that as many people as possible get the best treatments? And we use records in a way that doesn't identify individual patients.
"Many people argue that use of electronic health records can bring huge public health benefits, and help us to target the resources of the NHS better."
To help Professor Cassell to put her case, students from Northbrook College will provide their own dramatic interpretation of the points Professor Cassell raises, using theatre sketches, songs and visual media.
In her talk, Professor Cassell will also explain how scientists from the Department of Informatics at the University of Sussex are helping epidemiologists like her to extract meaningful information from computerised records, which can be partly in code or in ordinary text.
Professor Cassell says: "As researchers, we started off looking at coded data. Hidden behind the codes is a more complex record - the words of the doctor, hastily written sometimes, misspelt often, very frequently quoting your own words as a more vivid image of what the problem was for you. But to look at these notes for thousands of patients, we need to find ways of extracting this information quickly and reliably. Our team of computer scientists, statisticians, health researchers and doctors is working to understand what makes doctors and nurses record information in different ways, and to find how we can get this information out.
She adds: "Giving this lecture is a rare opportunity to engage with a non-university audience on your subject. I am particularly pleased that Northbrook students will be adding a dramatic edge to what I hope will be an interesting evening for the audience."
Notes for editors
Notes for editors
The Brighton and Sussex Medical School is run jointly by the universities of Sussex and Brighton. See www.bsms.ac.uk
This event is sponsored by The Health Company.
University of Sussex Press office contacts: Maggie Clune, Jacqui Bealing and Daniëlle Treanor. Tel: 01273 678 888. Email: firstname.lastname@example.org
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