Patient Record Enhancement Project

The Patient Records Enhancement Programme (PREP) was a multidisciplinary joint research project aimed at developing technological solutions for increasing the utility of Electronic Health Records. Led by the Brighton and Sussex Medical School, the main partners included University of Sussex and the University of Brighton.

It brought together a multidisciplinary team including clinicians, computer scientists, computational linguistics, human-computer interaction (HCI) specialists, database specialists, sociologists, and medical statisticians.

PREP’s aim was 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 was particularly interested in developing techniques for using free text information. The information contained in free text fields (notes, letters, reports etc.) can be difficult to manage, By determining the balance between free text and coded data along with completeness of recording in primary care, the PREP team is examining how this variation affects data accessibility for the users of electronic patient records.

The study had 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.

Prof Jackie Cassell, Professor of Primary Care Epidemiology said:

“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.”

University of Brighton researchers were involved in the human-computer interaction ‘user studies’ element of the project, undertaking field studies in General Practice to understand how and why data is collected in the electronic patient record in the way it is.

It was hoped that findings will improve understanding about how ‘real life’ records are produced and used and contribute to the development of techniques to enhance the impact of free text information.

Initial findings suggested that GPs’ recording practices are influenced by a range of factors including: national and local policies (Department of Health, professional bodies, GP practice policies); system/technology affordances, design and customisation issues; local primary care audit requirements; practitioner training, roles and preferences; and patient health condition.

Awareness of, and interest in, recording for secondary users such as public health researchers was low. GPs’ priorities focused on how recording could be used to enhance patient care, demonstrate clear clinical thinking, support team working within the organisation, show risk awareness and protect both GP and patient, and secure payment.

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.

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.”

Primary outputs

Axelrod L, Fitzpatrick G, Henwood F, Thackray L, Simpson R, Nicholson A, Smith H, Rait G, Cassell JA, (2011), 'Acted reality' in electronic patient record research: a bridge between laboratory and ethnographic studies, 13th IFIP TC13 Conference on Human-Computer Interaction (Interact), Lisbon, Portugal, 5-9 September.

Axelrod L, Fitzpatrick G, Henwood F, Nicholson A, Rait G, Smith H, Cassell JA, (2011) Secondary use of data recorded in primary care: insights from human computer interaction field studies, 40th Annual Scientific Meeting of the Society for Academic Primary Care (SAPC’11), Bristol, UK, 6-8 July.

Axelrod L, Fitzpatrick G, Henwood F, Nicholson A, Rait G, Smith H, Cassell JA, (2011), Data recording in primary care field studies. at the user centred design of pervasive health applications workshop, 5th International ICST Conference on Pervasive Computing Technologies for Healthcare, Pervasive Health, Dublin, Ireland, 23-26 May.

Axelrod L, Fitzpatrick G, Henwood F, Nicholson A, Rait G, Smith H, Cassell JA, (2011), Technologies for healthcare, 5th International ICST Conference on Pervasive Computing Technologies for Healthcare, Pervasive Health, Dublin, Ireland, 23-26 May.

Axelrod L, Henwood F, (2010) Dances with disciplines, European Association for the Study of Science and Technology Conference (EASST’10), Trento, Italy, 2-4 September.