Data from half a million patients to aid research

UK Biobank, a medical research initiative charity, is to start using patient data to provide reliable assessment of different causes of diseases, from 15 April.

Andy Harris, a systems architect for the charity told an Oracle press briefing at the World Health Care Congress in Barcelona that the charity would have access to patient lists to select and invite people to help with a large scale prospective and retrospective resource to enable and support health research.

“We are aiming to invite half a million people aged between 40 and 69 from across the UK, but not Northern Ireland. We will take samples and data from patients which will be collected in our clinics and stored in secure archives. With the information, we aim to gather information, measurements and samples and be able to follow progress for up to 30 years.”

The charity will look at demographic data on patient records and send out written invitations to five million people. A previous pilot of the research collection had a 10% response rate and the charity expects a similar response to gain the 500,000 attendees.

Initially, they will open up eight to ten assessment centres resourced to see 100 people per day, located in urban centres. The University of Manchester is one agreed site.

Appointments will last 90 minutes and will begin with a touchscreen lifestyle questionnaire, designed to be “completely user friendly”, followed by a clinical interview with samples and vital measurements being taken.

Harris told E–Health Insider: “We have very strict rules of consent in place over six different parts. A patient can withdraw at any time and if they do not respond to their invitation, we will leave it there. We are aiming to provide a reliable assessment of different causes of diseases.

“We have been funded by the Medical Research Council and the Wellcome trust and are backed by the Department of Health and the Scottish Executive. We will be using around 70,000 litres of liquid nitrogen to keep samples and resilient Oracle bespoke systems will be used in assessment centres with secure transmission of data to an Oxford interim store.”

In the future, the charity hopes to be able to retrieve follow up data from the NHS and other sources, but meanwhile the charity has worked hard to ensure it remains within the Data Protection Act (DPA) requirements.

A UK Biobank spokesperson added: “Time and effort has gone in to ensuring that our recruitment activities comply with the DPA. The contact details that we have (to invite people to join the project) are processed in confidence on behalf of the NHS (which remains the ‘data controller’), in accordance with the terms of the DPA.

“In addition, release of these contact details has been formally reviewed by the senior guidance and policy manager in the Office of the Information Commissioner who has indicated that such an approach using NHS contact details complies with the DPA and approval for the release of contact details from NHS records for recruitment was subsequently received from the Patient Information Advisory Group.”

Professor Michael Thick, clinical officer of Connecting for Health, said that such research could help introduce a more personalised medicine service.

“Healthcare at the moment is a reactive process; we should be turning it round to proactive productive testing to prevent people from being ill. We could get a much better profile for diseases and use predictive profiles to help or to warn people in advance. There is only a half hearted look at predictive genetics at the moment. People must realise we are what we eat and breathe.

“In a world where healthcare resources are very scarce the onus is on us to behave right and if we choose to ignore the advice then the onus should be on the individual to treat themselves. In order to progress with this, we absolutely rely on computer interoperability and computing data standards. Unless we get that right, then such personalised data would depend on little islands of data. ”

Professor Thick said that interoperability was an issue which would be high on the computing agenda for a while, citing the two main systems suppliers in the National Programme for IT as an example of the problems being faced.

“The standards of Cerner and iSoft are based on different structures which are not necessarily compatible at the moment and given that we have not been able to agree on a consensus on coding, interoperability is something we are hoping for but will not necessarily happen.”

Jean–Francois Penciolelli, global business development director at Oracle said: “IT can bring patient relationship management multiplied and with reminders. There is more information and more interaction generating a huge amount of data which can be used to help prevent diseases.”

Charles Scatchard, vice-president of Oracle added: “It’s important not to understate how important this development is. Personalised medicine can increase the chances of survival from bowel cancer for example, normally as little as 3% but with personalised medicine, this could increase to at least 95%. Now the only argument is can we afford it?”