The Guardian has written about the first transfer of medical records between two hospitals using Patients Know Best.

A young lady, coming up to her 18th birthday, was able to do the transfer by granting her new specialist team access to her old pediatric medical records. The two hospitals – Great Ormond Street Hospital and St Mark’s Hospital – are both in London, but from completely different NHS Trusts. Rather than having to wait for integration between the two hospitals’ computers systems – something that may never come given the failure of the National Program for IT – the transfer of data could happen instantly because the patient is in control.

This story is particularly meaningful to me because I remember my own transfer to adult care as an 18-year old. I was a sulky teenager, especially about my illness. Moving from a pediatric ward to an adult one full of much older and much sicker strangers was stressful despite the best attempts of the wonderful doctors and nurses looking after me. I hope that this Great Ormond Street Hospital patient and others have an easier time thanks to controlling their records.

Great Ormond Street hospital transfers patient’s records using ‘medical Facebook’

Gastroenterology department uses online tool Patients Know Best to transfer a patient’s medical history to another hospital

Great Ormond Street children’s hospital trust said it has for the first time transferred the medical history of one of its patients to St Mark’s hospital, Harrow, using online tool Patients Know Best, a patient controlled healthcare records system.

The patient concerned had a complex medical condition and a large team managing their treatment and needed to be moved to adult care at St Mark’s because they had reached 18 years of age. Great Ormond Street said that without the new system, it would have to print out and post medical notes to the patient’s new team, involving staff in re-keying or re-scanning information.

Using Patients Know Best, which works by a patient logging into the system in the same manner as Facebook and adding a doctor, the new clinical team at St Mark’s were invited to be the patient’s “friends” and were granted immediate access to their whole medical history.

Susan Hill, consultant gastroenterologist at Great Ormond Street hospital, told Guardian Healthcare that because plans to have a central spine for patient records had not been implemented, hospitals have had to seek alternatives. Her department chose to use Patients Know Best because it aims to give patients responsibility for their own records.

“We can then use this system to communicate with patients when they have questions about their care,” she said. “But what’s nice about this is if you’ve got new health workers taking over care and you’re handing a child over from paediatrics to adult care, it can all be done electronically rather than a whole load of letters and phone conversations and having to go backwards and forwards,”

Great Ormond Street’s gastroenterology department started using the system a year ago and some 30 patients are using it, although Hill stressed that it was “still early days”. Parents of patients control their child’s record until they are 16, after which it becomes their responsibility.

Talking about the benefits, she explained that if a child with a complex condition were to go to a local hospital, that hospital may not know how to deal with that patient as the care they require is so specialist and all their notes may not be immediately accessible. But she said that with the new system “you can just log-in and show a doctor [your medical history] if you roll up to a casualty somewhere”.

Dr Mohammad Al-Ubaydli, founder and chief executive of social enterprise Patients Knows Best, said he was hopeful that his system will not suffer the same fate as Google Health, which is being withdrawn in 2012 because of poor take-up. He said his system differs from Google Health because healthcare professionals upload information, rather than relying on patients to do so. Patient Know Best allows patients to control who accesses their information, however.

Hill believes that the system has the potential to be rolled out further at Great Ormond Street hospital, but acknowledges that this kind of technology is not being fully exploited in the NHS.

“We’re not using to its full potential yet and I think it will be a very exciting way forward with any patient, but particularly with complex cases,” she added.