GOSH uses PKB in revolutionary new patient record handover project

Patients Know Best (PKB), the world’s first patient-controlled online medical records system is enabling the first fully online transition of patients’ medical histories between Great Ormond (GOSH) and St Marks Hospital Northwick Park, London. 

The patient portal by PKB is currently being used in GOSH’s gastroenterology unit and is assisting with the transition of a group of teenage patients from a paediatric unit to an adult hospital. All the patients involved in the trial suffer from intestinal failure, a highly complex condition which means that they must be given a nightly treatment of nutrients infused into the bloodstream– normally delivered by their parents.

Dr Susan Hill, consultant gastroenterologist at GOSH explains: “The patient transition process is usually a fraught, emotional one that has to be approached very sensitively. Not only are you handing over people being treated by several multidisciplinary teams, you’re also dealing with young people who are in the process of becoming adults and taking over the responsibility of their own treatment from their parents – and some adapt to all that better than others. These patients are at a very vulnerable age. They need to feel that they are going to be cared for in the way they’ve become accustomed to when they move from one unit to another.” 

The GOSH patients using the patient portal in the PKB group are all using the software to manage their own treatment. This involves having online consultations, having full online access to their patient notes and clinical letters and taking a more active role in their treatment. Now, the software is being used to transfer some these patients – and all their medical notes and records – to their new healthcare team at St Marks Hospital.

However, the complex nature of the condition means that a patient’s treatment is normally delivered by several multidisciplinary teams such as specialist nurses, dieticians, pharmacists, home care companies, GP, administrators and the doctors themselves. It is important in any transition process that all these different people act as a ‘joined up’ group to ensure consistency of care – something often difficult to achieve with the current system.

Hill continues: “Before PKB, we would have had to post a patient’s medical records to the new medical team. Once a consultant received the notes they would then be entered into a new system and a new set of notes would be started. However, it’s usually only the person who has access to the notes who has access to the patient information. PKB has the potential to give the whole care team a single view of a patient’s history – and that could make a big difference to their care.”

Operating along similar principles as Facebook, PKB allows the patient, or the patient’s existing healthcare team, to ‘invite’ individual members of their new care team to be their PKB ‘friends’. Once they accept, new members have full access to their medical history. By taking a patient-centred approach, PKB gives the patient more control of their treatment and more control of their lives – something especially important for teenagers reaching adulthood. 

“One of the reasons why my patients sometimes refuse treatment or fail to take it is because they don’t feel they have ownership – they feel that their treatment is being imposed on them. My hope is that that through using PKB, they’ll feel part of the process,” said Hill. 

“We’ve been involving the patient more and more in their own care for some time now and I feel that PKB is a natural progression for us. Also, PKB’s a form of communication that teenagers are very used to dealing with. They’re not used to reading long paper letters – and that means they’re more likely to get involved.”

In terms of learning points from the PKB project, Dr Hill has seen the benefits that openness between patient, family and clinician can give. She said, “We’re definitely learning that there’s no harm in patients and parents having closer access their information – and having more control. The more open and honest we all are with each other, the more trust develops and the better we are able to look after the patient and their illness.”