This page is part of the documentation of the work of Surrey and Sussex Healthcare NHS Trust. 

Patients Know Best, the world’s only fully patient-controlled medical records system will be rolled out to 4,500 inflammatory bowel disease (IBD) patients across the Surrey and Sussex Hospital Trust (SASH) region.

Patients Know Best (PKB) is a multi-award-winning online platform giving patients full control of their medical records and a range of tools to help them better self-manage their care.

To date, over 400 IBD patients have been supplied with a Patients Know Best account and are actively using the system to manage their condition and remotely communicate with their clinical teams, if and when they need.

This pilot project is funded by Janssen, a pharmaceutical company of Johnson & Johnson, as part of a wider initiative to harness technology and empower patients, giving them greater control over their own health and treatment. Janssen is committed to delivering outcomes through innovative solutions for the NHS through a dedicated Health Solutions Team.

The evaluation of this year long pilot will be used as part of the business case to implement this roll out to the larger number of IBD patients.  It is hoped that the remaining patients will be introduced to the new system over the next few months.

Dr Azhar Ansari, project lead and consultant gastroenterologist at SASH said:
“IBD is a complex, long-term condition that requires us to be in close, regular contact with the patient.  Patients often experience distressing flare-ups of the disease which can require urgent hospitalisation. However, through 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.”

SASH is now one of 30 hospital trusts in the UK which is deploying Patients Know Best. The system is translated into 19 languages and now operates in over 90 sites across the world.

Dr Mohammad Al-Ubaydli, founder and CEO of Patients Know Best said:
“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. Patients Know Best’s software allows this and we are delighted that SASH has become another customer using our patient controlled records approach to improve the lives of their patients.”

Mark Hicken, managing director, Janssen UK & Ireland, said:
“At Janssen we are focused on working in partnership with the NHS to help find innovative solutions to the challenges they face and improving outcomes for patients.  By giving patients greater control of their own care, Patients Know Best is expected to positively impact the way that their conditions are managed, while releasing valuable resources back to the NHS – all of which can be reinvested in improving care.”​