Case Studies

Visceral Myopathy, a Patient Story from St Marks Hospital - St Mark’s Hospital patient Jason Murtagh has a condition called Visceral Myopathy, a highly rare chronic disease which means that his gut fails to properly absorb nutrients – indeed the condition is so rare that few gastroenterologists will encounter a case in their careers. Diagnosed in 1988, Jason’s disease involves him being reliant on a line which administers nutrients directly… Read More
Managing complex conditions across geographical boundaries - The Royal College of Physicians “Personal health records (PHR) – landscape review” report in 2016 highlighted the work of St Mark’s Hospital using Patients Know Best. Acknowledgements This case study was informed by discussions with: > Simon Gabe, Consultant Gastroenterologist, St Mark’s Hospital > Lloyd Humphreys, former Vice President of Business Development, Patients Know Best® (PKB) It is also based on a review of… Read More
Halving HIV clinic times in North Manchester General Hospital - FeaturedNews 9 October 2020 by Gurpreet Sarai The Regional Infectious Diseases Unit (RIDU) based at North Manchester General Hospital is one of the largest units of its kind anywhere in the UK and offers specialist clinical services to patients across Greater Manchester – and more widely. Digital care for 2000 HIV patients In 2014, the RIDU rolled out Patients Know… Read More
Helping neurologists to improve epilepsy diagnosis in Peterborough and Stamford Hospitals - Peterborough and Stamford NHS Trust is encouraging the families of children with epilepsy to upload videos of their seizures to Patients Know Best to help with diagnosis. Dr Richard Brown, consultant paediatrician at the trust, said the system was having a significant impact on patient care as it makes it easier for families to share video footage, which is “crucial… Read More
Improving care for Leukaemia patients in Oxford University Hospitals - Cancer patients in Oxford are benefitting from a medical records system which provides them with more support outside of the clinic and in the community. Professor Anna Schuh, a consultant haematologist at the Oxford Cancer Centre, which is based at the Churchill Hospital in Oxford, began using Patients Know Best, a patient-controlled system in 2015. Professor Schuh is a leading authority on… Read More
The world’s first patient-powered registry for Gaucher’s Disease - Dutch not-for-profit organisation, Fair Medicine was founded to shine a light upon – and improve the complicated and often opaque process used to develop new pharmaceutical treatments. A system they believe doesn’t work well for the patient – or drug purchasers. Since 2015, Fair Medicine has been working with Patients Know Best to develop a more open model for drug… Read More
From dependence to freedom – PKB and Delphi Medical - Established in 2007, Delphi Medical employs over 60 doctors, nurses, and supporting staff. The organisation provides drug and alcohol clinical services to communities across Lancashire, Sefton and to two prisons in the North West of England. Delphi Medical is a leading independent provider of clinical services for substance misuse patients and the first provider of its type in the UK… Read More
Care Information Exchange – The largest shared patient portal program in the UK - The Care Information Exchange is the first population-level roll out and the largest shared record patient-portal program across the UK, hosting the health records of over 2.3 million people in North West London. The patients are from all across the UK including every country, island and health board. In 2015, Patients Know Best (PKB) teamed up with NHS healthcare providers… Read More
Alkaptonuria Society – self managing a rare genetic disease - Simon Laxon is one of only around 80 people in the UK known to have Alkaptonuria or AKU – a highly rare inherited genetic disease which often leads to a range of other interrelated and often debilitating conditions such as osteoarthritis, heart problems and kidney infections. ​ Living in Coventry, Simon must be treated by a whole host of different… Read More
Generating savings for investment in patient care - It’s a common picture; hospitals sending out thousands of appointment letters every day via post and out of those some go missing and needless to say, it all comes at a huge cost. For Western Sussex Hospitals NHS Foundation Trust (WSHFT), it’s a similar story. Letters to patients are sent via royal mail but before that, they have to be… Read More
A national integration unlocks patient empowerment in Wales - Abertawe Bro Morgannwg University (ABMU) Health Board had a bold vision to promote self efficacy and unlock patient empowerment across Wales. Armed with a team of passionate changemakers, they looked for a solution that would enable patients to be more involved in their care by securely providing access to their own health records . As a multi-award winning tool designed… Read More
Better care leads to savings in Inflammatory Bowel Disease - Surrey and Sussex Healthcare NHS Trust (SASH) introduced PKB to help IBD patients to self-manage their condition and remotely communicate with their clinical team. Read More