Surrey and Sussex IBD patients receive patient-controlled records

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.”



Chris Smith

Swarm Communications for Patients Know Best

+44 (0) 7989 321 743

Tasha Gardner

Surrey and Sussex Healthcare NHS Trust

01737 768511 ext 6838

Notes to editors:

About Patients Know Best

Patients Know Best is the world’s first fully patient-controlled online medical records system and a multi-award winning tool to help patients better manage their care. Patients Know Best is fully secure and enables patients to better organise, manage and control their own health care provision – it also saves the time of physicians through allowing secure, online consultations. Patients Know Best’s first customers include Great Ormond Street Hospital, St Mark’s Hospital and NHS South Devon. Patients Know Best integrates fully into the NHS N3 secure network and is available for use by any patient with any clinician anywhere in the world. It is now used by over 60 hospitals across seven countries and complies fully with UK NHS information governance requirements as well as the EU Data Protection Act and US HIPAA legislation for dealing with medical data.

Awards include:

  • October 2015: E-Health Insider Award, ‘Best Use of Technology to Share Information with Patients and Carers’.

  • September 2015: Awarded a ‘founding member’ of BCorporation.

  • June 2015: One of 17 companies chosen for NHS England’s Digital Health Accelerator Programme.

  • May 2015: Received ‘Champion’ award at the eHealth Competition, a Europe-wide, European Commission-backed prize.

About Surrey and Sussex Healthcare NHS Trust (SASH)

SASH runs East Surrey Hospital in Redhill and provides a range of services at hospitals in Crawley, Horsham, Caterham and at The Earlswood Centre and Oxted Health Centre. It has a growing catchment population of 535,000 residents in east Surrey and northeast West Sussex and is the designated hospital for Gatwick Airport and the local M25 and M23 motorway network.  The Trust employs about 3,700 staff and has an annual budget of around £240m delivering vital NHS services. For more information visit:

About Janssen

Janssen is one of the world’s leading research-based pharmaceutical companies and is part of the Johnson & Johnson family of companies – the largest diversified healthcare group in the world with over 100 years of scientific heritage.  At Janssen, we are dedicated to addressing and solving some of the most important unmet medical needs of our time in oncology, immunology, neuroscience, infectious diseases and vaccines, and cardiovascular and metabolic diseases. Driven by our commitment to patients, we bring innovative products, services and solutions to people throughout the world. Our dedicated Health Solutions Team is committed to enhancing the provision of co-ordinated patient care through the delivery of innovative, technology-based solutions for the NHS.

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