New medical records system a step closer
AN INNOVATIVE medical record system which gives patients access and control over their own health information has taken an important step forward in Wales.
Patients Know Best (PKB) is the world’s first patient-controlled online medical record to help patients better manage their overall care.
It is described as a “fully secure system” which enables patients to organise and share their own personal records with others.
For example they can share information not only with clinicians anywhere in the world, but other organisations like social services, or even members of their family.
The choice about who sees their records and what they see is entirely theirs.
Now ABM University Health Board (ABMU) – which has carried out several successful PKB pilots – has established a national framework for its use across Wales.
The framework, which has been approved by the Cabinet secretary for Health and Social Care, Vaughan Gething, will allow other NHS Wales organisations to buy and implement the system.
ABMU has been working with the National Welsh Informatics Service (NWIS) to provide the secure connections needed to enable patients with a PKB account across Wales to receive a copy of their results and letters from the national IT systems.
The framework adds to work already being done by PKB at a national level with NHS Wales and young adults’ diabetes services across all local health boards in Wales, as well as the 1,000 Lives Project with the Ear Nose and Throat department in Cardiff and Vale University Health Board.
ABMU’s pilot PKB schemes have included dermatology, prostate cancer and inflammatory bowel disease.
Professor Hamish Laing, executive medical director, director of informatics and innovation at ABMU said: “We are delighted to be working with PKB to empower our patients by sharing their own health information with them and helping them share it with others, securely. Not only will this help patients to look after their own health better, but it will allow us to provide care in ways that are easier for patients and more efficient for the Health Board. We look forward to making this available to our patients in the Bridgend area over the coming months.”
Dr Mohammad Al-Ubaydli, CEO and founder of Patients Know Best said: “This is Europe’s first national framework for a patient-held medical record. We are proud that PKB was chosen for its patientcentred approach and delighted that ABMU are leading the way in Wales. Patient-controlled records are the only way to deliver integrated care at scale.” Case study: Lee Everett-Pride, from Swansea, was involved in one of the ABMU Patients Know Best pilots as her 12-year-old son Sam has juvenile dermatomyositis.
This is a rare auto-immune disease that causes inflammation of the skin and the muscle.
As a result, Sam has seen doctors not only in Swansea and Cardiff but also in London’s Great Ormond Street Hospital.
The PKB system was not fully up and running during the pilot, so Lee was only able to access some of its features – but said it had the potential to be very useful.
Lee said: “Instead of having to take the paperwork to each of the hospitals for them to photocopy for their records, it’s all there electronically through PKB.
“It allows for easier communication because you can invite doctors or anyone else to access your page.
“There is an option to send non-urgent messages to consultants via the tool which will help the patient to manage their own health and could reduce the number of hospital appointments.
“There’s a journal you can use to record symptoms and useful information, and an area to document medication. Both of these are very useful when you are seeing different consultants as all the information is in one place.
“It is in the early stages but once it’s fully up and running I think it is going to be very beneficial to both patient and doctor.”