Surrey and Sussex Healthcare NHS Trust is to offer patient-controlled electronic records to more than 3,200 people with inflammatory bowel disease.

A pilot study funded by pharmaceutical company Janssen (part of Johnson and Johnson) has already seen more than 400 patients with IBD use the Patients Know Best system.

The solution is integrated with the hospital’s Cerner Millennium electronic patient record, allowing the patient record to augment the hospital record.

Dr Azhar Ansari, project lead and consultant gastroenterologist at Surrey and Sussex Healthcare said: “By using Patients Know Best, the patient can self manage their condition far more effectively and warn us before problems occur.

“In many cases we can avoid A&E visits and that’s good news for the patient – and for our hospital.”

He called the use of electronic, patient-held records “our Gutenberg moment in healthcare” and said: “We cannot have a long enough interview to discuss the social movement that is happening with unrestricted patient access to secondary care and shared data.”

The Patients Know Best implementation at Surrey and Sussex builds on earlier work at Luton and Dunstable Hospital, where patients with IBD have used the system since 2014.

In Surrey and Sussex, a web-enabled version interfaces with the trust’s integration engine, taking feeds directly from Cerner Millennium as well as clinical documentation, lab results and the Dictate IT digital dictation system.

Dr Ansari said the technology, in combination with investment in specialist nurses by NHS East Surrey Clinical Commissioning Group, is helping to transform the way he cares for 3,200 patients with IBD.

IBD – which includes Crohn’s disease and ulcerative colitis – is a potentially serious long term condition, with patients prone to flare ups requiring hospitalisation. Managing the disease to avoid flare ups requires regular follow up.

There is no cure, but since 2008 new monoclonal antibodies have become available to treat the disease. These cost up to £15,000 per patient per year, but become ineffective after a few years.

The older, tablet-based treatments cost a fraction of the newer treatments, but require more regular follow-up with patients.

Dr Ansari said this was difficult to achieve under current funding arrangements and is not supported by patients, many of whom are working or school-age and find regular hospital appointments expensive and disruptive.

He had attempted to meet the need for remote consultations by offering telephone and email contact but had been rapidly overwhelmed, receiving more than 4,000 contacts last year.

He said: “When we analysed them, less than 1% were wasting time and about half were to discuss blood monitoring.”

“Using Patients Know Best and our specialist nurses, we have been able to create safe patient pathways that can support people using tablet-based treatment. We started with 60 patients on tablets and now have 700. This is a significant saving to the NHS.”

He added: “If a patient needs a blood test, we can order it here, create a pdf and send this to the Patients Know Best record so the patient can get the test done at his or her GP. The results are shared via Patients Know Best so everyone knows the result.”

Patients had been able to share their record at A&E, said Dr Ansari, and had become more knowledgeable about their condition and their treatment. A formal evaluation of the pilot is being discussed with the University of Surrey’s medical informatics department.

Dr Mohammad Al-Ubaydli, founder and chief executive of Patients Know Best, said: “Surrey and Sussex are taking Patients Know Best to a new level, but it is where the mainstream is going.”

Patients Know Best now being used in 30 hospital trusts. The system is translated into 19 languages and now operates in more than 90 sites across the world.

Dr Al-Ubaydli added: “The patient is the most underused asset in health care. With the right information, training and software, patients can self-assess and self-manage with better outcomes and lower costs.”