Power of patient research

July 20, 2012 at 2:13 PM

PREP data research presented at Westminster event

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Pictured above: Dr Lesley Axelrod (Informatics, University of Sussex) and Prof Jackie Cassell (BSMS) at the APPG on Medical Research Summer Reception
(images courtesy of Wellcome Images)

Members from the Patient Records Enhancement Programme (PREP), a multidisciplinary joint research project whose main partners are Brighton and Sussex Medical School, the University of Sussex and the University of Brighton, recently attended a parliamentary reception and exhibited a poster which demonstrated the power of data for research.

The All Party Parliamentary Group (APPG) on Medical Research hosted an event in July at the House of Commons where MP's and Lords joined data researchers to see how data can be used to transform our understanding of conditions and help us improve healthcare. The event aimed to show parliamentarians why data matters and set out what they can do to help make the most of data to benefit patients, society and the economy.

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View the full version of the APPG Summer Reception brochure.

Attending the event, John Savill, Chief Executive, the Medical Research Council said:

"Patient data is an exceptionally valuable resource for UK scientists, helping them to answer important questions about health and find new and better treatments for diseases. A streamlined regulatory process would ensure that research is not delayed, bringing health benefits to patients as quickly as possible."

PREP's aim is to enhance the usability of health records, such as computer records in general practice, for public health purposes. Examples which have been studied include, 'How much delay is there for people with cancer between first consulting a GP with a symptom, and referral /diagnosis?' and 'How would you find cases of rheumatoid arthritis in GP records in order to give them a new drug?'

PREP is particularly interested in developing techniques for using free text information, which is hard to access, and analyse, and limits the use of the records to answer public health questions.

The study has four main streams of work:

User-centred studies of how GPs record information, using social science techniques of observation and analysis, computational linguistics - using computers to analyse textsanalysis of large datasets.Novel methods of visualizing (showing) health records to researchers and others who want to use them.

For more information about PREP, please visit the PREP website.

Prof Jackie Cassell, Professor of Primary Care Epidemiology states:

"Electronic Patient Records contain a wealth of data, but the free text which doctors and nurses use to record details has been largely ignored in medical research. We need to understand 'real life' records – how they are produced and used – and PREP is beginning to give us some answers relevant to the NHS."

The APPG on Medical Research includes MPs and peers from across the political parties. Established in December 2005, it provides a network for Parliamentarians with an interest in the medical research sector. The APPG is supported by the Medical Research Council, the Academy of Medical Sciences, the Association of Medical Research Charities, Cancer Research UK, and the Wellcome Trust.

For follow up information about the APPG on Medical Research Summer Reception, please visit the AMRC Policy Blog.

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