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-Ulcerative Colitis and Crohn’s Disease are the two main forms of Inflammatory Bowel Disease (IBD) – a long-term condition affecting more than 300,000 people in the UK. IBD causes inflammation of the gut where symptoms can flare up at any time. The importance of monitoring Regular monitoring and the ability to receive prompt treatment at the time of the flare-up… Read More
Better communication leads to better care for HIV patients-Derriford Hospital in Plymouth became one of the first NHS hospital trusts in the UK to use Patients Know Best (PKB) to manage the care of its entire cohort of HIV patients – through a pilot study supported by Janssen, a pharmaceutical company of Johnson & Johnson. Sexual Health and HIV Consultant, Dr Zoe Warwick, lead the initial rollout in… Read More
A personal story leads to a local solution in Torbay and South Devon-In 2011, Gary Hotine, Health Informatics Service Director, at Torbay and South Devon NHS Foundation Trust (TSDFT), contacted Patients Know Best (PKB) looking for a solution to join up communication between healthcare services and patients or carers. However, unlike others, Gary’s story was personal and as he said: “it was a family problem that led me to discover and use… Read More
Transitioning teenagers from paediatrics to adult care-Great Ormond Street Hospital (GOSH) is home to a leading gastroenterology department caring for some of the most poorly children and teenagers across the country and beyond. The department cares for children and teenagers suffering from intestinal failure – a highly complex condition which requires a nightly treatment of nutrients to be infused into the bloodstream – something usually administered… Read More
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