An innovative medical record system, which gives patients access to their own health information and direct control over who they want to share their information with, now has a national framework for its use across 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 a fully secure system which enables patients themselves 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.
This new approach differs from the traditional way of medical records being centrally filed and managed by NHS organisations; with the potential delays in information sharing, as well as consent issues, which this often brings.
Instead, PKB is a patient-centred system which supports a far more joined-up approach to patients’ care, by putting them in direct charge of their information on their mobile phone, tablet or laptop. It allows patients to communicate with their clinicians about their care and results, changing the way care is provided.
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 organisation 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.