Patients Know Best

Empowering secondary and tertiary patients with a digital platform that gives easy access to information about medications, appointments, test results and more – available across all of their devices.
About Patients Know Best

Patients Know Best (PKB) enables patients to securely access information about their past and present care via mobile, tablet or desktop, in one easily navigable place. It’s your care plan in your hands. 

Features include access to diagnosis, symptoms, measurements, test results, images, medicines, care plans, appointment, letters, reminders, self-reporting, rich information and the ability to ask questions of clinicians without having to travel to the hospital.

Patients will be able to self-report certain aspects of their health, which could significantly reduce unnecessary outpatient attendance. The capacity freed up in outpatients can subsequently be directed to further improvements, facilitating the delivery of better, more efficient healthcare.

PKB can also automatically receive and display data from smartwatches and apps (with patients’ permission), and track exercise, diet and sleep as part of preparation for treatments and recovery thereafter (linking to our prehabilitation programme).

In addition to supported discharge, PKB will facilitate a ‘Home First’ approach, using online questionnaires and telephone/video conferencing to further reduce the need for patients to attend site, especially if they live a great distance away. This also frees up capacity to more quickly see those patients that do need to attend site.

Crucially, PKB also enables patients to delegate access to their records within their circle of care, enabling increased support through better-informed carers who can see appointments, care plans, letters and medications. All such access is only permitted by the patient, who remains in full control of their record and can turn it on and off at any time.

Rollout

Having successfully piloted PKB over an 18 month period, Cardiff and Vale UHB has recently purchased the system and has begun the process of making it available to all patients across all specialties.

The team behind its implementation is working to make sure that it’s fully integrated with our existing clinical systems, so that its full information sharing potential can be utilised.

In the interim, a range of clinical areas are acting as early adopters and are in the process of building the PKB information screens and processes for their patients.  Specialties include Endoscopy, Irritable Bowel Disease (IBD), Ear, Nose and Throat (ENT), Audiology, Urology, Inherited Metabolic Disease (IMB), Haematology, the Paediatric Continence Service and the National Cystic Fibrosis Service.

Some early results from those areas include a reduction in health inequalities. ENT and Audiology have demonstrated that the time saved via unnecessary appointments and improved processes has allowed specialist nurses to target elderly and isolated patients who have disengaged from their services.  

The Cardiff and Vale Talipes Service, which supports the whole of Wales, is close to launching PKB to enable parents of children with congenital talipes equinovarus (CTEV) to have access to enhanced information and peer support. PKB will also replace the paper booklet that parents of children with CTEV currently have to take to all appointments and have manually updated by clinicians.

The ability for patients to carry elements of their health record with them, wherever they are, taking an active part in the own health, with a clear and accessible care plan is expected to deliver great benefits across all specialties.

Timeline
Project start (1)
“The mission of Patients Know Best is simple: it’s all about empowering patients with information about their own health so that they may take an active and informed role in their care plan.”

Mike Bailey
Digital Transformation Lead

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