The online system that allows University Hospitals Birmingham NHS Foundation Trust (UHB) patients to view and update their own medical records is set to be rolled out from 31 July 2012 to benefit people receiving long-term care.

The myhealth@QEHB portal was trialled by liver patients at Queen Elizabeth Hospital Birmingham (QEHB) and will now be phased in through 11 other specialties.

Feedback from patients who have "road-tested" the innovative system suggests it gives them more control over their care, improves their experience and, in particular for those who have complex conditions and undergo regular tests, makes their life much easier.

myhealth@QEHB was developed in-house by UHB, with funding from the QEHB Charity. The Informatics and IT Services teams involved patients and clinicians at every stage to ensure they delivered a system that best suited the needs and expectations of the people who use it on a day-to-day basis.

It reflects the "No decision about me, without me" principle to give patients high-quality information and support to allow informed choice and shared decision-making.

Daniel Ray, UHB’s Director of Informatics, said: “This system gives patients much more control over their care and means they will be able to manage their condition much more effectively. Ultimately it will lead to better outcomes and quality of life.”

Using real patient records and with greater functionality than other large-scale, web-based health portals, myhealth@QEHB allows patients in long-term care to remotely access, via the Internet, information held by the Trust, including test results, letters and medication details, as well as past and future outpatient appointments.

The system is updated on a daily basis and can be accessed in any location, so patients could view it even if they are on holiday.

If they choose, individuals can also interact with each other within the portal and create their own support networks. It has the potential to be a social network for the NHS, giving greater patient satisfaction, improving adherence and resulting in better outcomes.

In practical terms, it could allow a diabetic patient to log their blood sugar levels remotely and receive an alert to tell them or their carer that it’s time to take medication.

Consultant Hepatologist James Ferguson, who supervised the initial trial of the site, says the system is a perfect use of modern technology to improve patient care: “Some patients have to travel considerable distances from their homes to hospital but this will give them remote access to their health records.

“They have a right to see their results in a more convenient way and they will be able to share their records with other healthcare professionals, if they choose.

“I believe the system will improve patients’ understanding of their condition and its management.”

From 31 July, patients being treated in the following specialties will be offered access to the portal in a phased roll-out:

• Cancer (urology and oncology)
• Diabetes
• Endocrinology
• Respiratory
• Inherited bone conditions
• HIV
• Liver medicine
• Renal
• Haematology
• Rheumatology
• Inherited metabolic disorders

Initially, only patients in these specialties will be given the opportunity to use myhealth@QEHB following an offer from and discussion with their clinician.

myhealth@QEHB uses security systems similar to those used for Internet banking. A patient’s information only goes onto the system once they have signed up, and they can have all of the information removed if they change their mind.

Patients without Internet access who wish to sign up can nominate a friend, family member or carer to act on their behalf.

Case study

Four years ago Gary Taylor suffered acute liver failure and was diagnosed with autoimmune hepatitis.

His condition stabilised around two years ago, although it "flared up" towards the end of 2011 and he is currently undergoing further tests on his intestine.

“I also have an overlap condition called primary sclerosing cholangitis, or PSC, and it seems every time a test comes back I’m the exception to the norm,” says Gary, aged 28, who is Head of Digital for a media agency in Stratford-up-Avon.

“I’m also part of a PhD student’s study at the moment. I’m quite unique in my condition and how I respond to treatment.”

Because of the number  of tests he has undergone, and with regular MRI scans to monitor his condition, Gary, who lives in Northfield, Birmingham, was keen to sign up to myhealth@QEHB to help him track his progress.

He was told about it by his Consultant Dr James Ferguson, who supervised the pilot for the system in 2011.

“When James first mentioned it, I thought it was a great idea,” says Gary. “My background is in technology and web development, so I’m more than comfortable accessing information in this way.

“I’ll use it to access my results online, see appointments and letters, without the need to keep having to go the GP.

“Because I’m a technical person I like to be organised. I like the idea of being able to look back on things and ask: 'Is there a pattern?'

“The system will help me to try to understand my condition a bit more but the main thing is the convenience. I can get answers immediately by logging on rather than picking up the phone.

“I think myhealth@QEHB is a fantastic idea and something really positive for patients.”